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Name:: Debbie
Email:
Date:: 03/02/04
Time:: 01:08 AM

Comments

HELLO OUT THERE! HI MJ & TRACY & SKYLAR!! I want to apologize for not coming on this board for a WEEK already! That is not like me, but I guess things have just been incredibly hectic--I am taking two classes, working, working on the benefit, taking care of Payton and sometimes things just get CRAZY around here--Yes, Yes, I know, We ARE ALL BUSY RIGHT?? I guess this is just the world we live in now--people are working two and three jobs, having careers, raising children and still trying to find time for their favorite pasttimes--GOOD LUCK I say--it is not easy juggling everything--I look at people with three and four children and just am amazed at how they keep up with that kind of schedule--I was sick this weekend with stomach ISSUES--AGAIN--My doctor wants me to get a "scope"-- she thinks i may have an ulcer--IMAGINE THAT??!! I am not looking forward to anesthesia of any kind but I think this scope thing is long over due--UGH--I have just finished putting all these donation letters together so I am sending them out to those that have asked and to those that I have already talked to--If you need more or just need some period, shoot me an email and i will get them out to you asap--The garage sale is postponed til April due to the construction going on at my moms, but that is ok as I am working on picking up tons of stuff for the event--Let me know if you have things you need picked up and I will get together with you on a time--The Outback opening in Davie is definitely going to be set back so I will let you know when they let me know as to the new date--There is a lot going on and a lot of information pending so I will just post as things move along--Payton has been doing great and he is getting SOO BIG--He is a big boy too and does not like to be called my baby, even though I forget sometimes--I think he will always be my baby though--We are also starting the preliminary stuff for "SMA DAY"at University of Miami which will be held in 2005--this will be quite an exciting day and those details will follow too--Well, I better try to study for a bit--LOVE TO YOU ALL, Deb

Name:: Debbie
Email:
Date:: 03/03/04
Time:: 12:54 AM

Comments

Hello out there--there are some pics from our disney trip at this link from my moms digital camera--It was such a great trip and as you can see--the characters just adore Payton- http://homepage.mac.com/payton2000/PhotoAlbum2.html

Name:: Debbie
Email:
Date:: 03/04/04
Time:: 01:18 PM

Comments

Hey out there!! I just wanted to let those of you that live far away that i have mailed a bunch of donation letters out!!--Holli, Lisa, Sari, Jenn, Meghan, Daun, Pamela & Michael, you should all be getting letters in the mail--so be on the lookout & if you need more just let me know--I have been dropping letters off to those that live locally or having people pick them up from me or ROb, so if you need some let me know!! Payton is doing great and he is helping me study today outside (because he says he loves it outside, EVEN if it is hot!!) so wish us luck--LOVE TO ALL--

Name:: Jennifer
Email:: Jennifer@dtrtinsurance.com
Date:: 03/05/04
Time:: 09:59 AM

Comments

Hey Debbie. I recieved the donation letters in the mail yesterday. I am definitely gonna go out and see what I can get. Let me know if you need help with anything else. I know I wont be there to sell all the stuff but if you still want me to help you pick out anything I would be happy to. We should be able to make it for an hour or so towards the end of the night. Well keep in touch. Hope all is well with Payton. Love, Jennifer

Name:: Debbie
Email:
Date:: 03/05/04
Time:: 12:41 PM

Comments

HEY Jenn!! I am so excited that you guys will be able to come even if just towards the end!! I will be so happy to see you guys--I definitely want to get together to go over what shirts and sweats etc.. that we will get this year and just basically how you've been running things with that area, cuz honestly you guys have done such a great job and been so reliable that that is the one of the only things at the event that I don't even have to think about!!! I am not sure who will be selling the tees, etc.. this year, but I haven't really organized the volunteers yet--I am really just working on getting these letters out to everyone--I am giving them out as I see everybody or can mail them--Andrea, thanks for the tips last night for a decent nights sleep & for all the motivational talks and for always making me feel good about what we are doing!! You are a true angel & I really appreciate all your ideas, support and kindness to our family and esp. to PAYTON!! We are soo lucky to have so many people that really care about Payton and the future for these kids--THANK YOU EVERYONE FOR HANGING IN THERE WITH US--I know it is not easy to even Think about sad, tragic things, but getting involved is making a difference and we are REALLY getting close to a treatment for sma!! Human drug trials have just started so we should know within a year if two different drugs are viable in the treatment of sma!!! KEEP YOUR FINGERS CROSSED!!!!!!!!!!

Name:: Meg
Email:: mvesey@flagler.edu
Date:: 03/05/04
Time:: 10:27 PM

Comments

Hey Debbie, I got your donation letters today, Thanks! Now, I was wondering what I need to do with them, are these the letters that people need to fill out with what they are donating? A signed baseball, bed and breakfast weekend, etc.? I was also wondering if you want me to hunt for some things up here, will people use them even though they are for Saint Augustine? Are they worth the drive? Email me back. Hugs and Kisses, Meg

Name:: Debbie
Email:
Date:: 03/06/04
Time:: 02:17 AM

Comments

Hi Meghan!! You can let people that donate keep those letters or leave them with them til they can find out if they can--I don't need them back and they are really for the person that donates, to keep--they(the letters) have our tax identification number and information about sma that we want them to keep or have on file, so don't worry about handing them out--sometimes people won't even need it--For instance, if you are in a restaurant and ask for a manager while you are eating--then show him/her the letter while you tell him/her about what you involved with and a bit about sma or the kids that have sma and Payton--and that you would like to know if they would be able to donate a gift certificate for the silent auction that we have--they usually either will say that they need to talk to someone else and they keep the letter for that purpose and ask you to come back on another day--(which I would give it to him and take a business card of owner/manager and just give them a buzz over the next couple of days to see if they can help) OR, they say yeah, sure hold on a sec!! It is extremely EXCITING when they do decide to just say YES & help!! In that case, they may take the letter for tax id purpose etc.. or they say no, you can keep it--Either way, the letters are not needed back and they don't need to fill anything out--you would just take the items that they give and bring them down whenever you are here and we will place them on the auction--the only thing I ask, is that when things do get donated to let me know, so that we can put them on our "master list" --which we use for a couple of reasons, one being to keep track and make up our auction booklets early--but also to keep all of us from going to the same people twice ( I doubt any of us besides Meghan are in St. AUgustine! but you never know!!:)) Please remember that the EASIEST ways to do this are through friends and family--Believe me, you would be surprised at just who you know and what they can help you with!! Now, up in St. AUgustine, I would stick to things like "chili's" or or "ruby tuesdays" --places that you know are down here too--Unfortunately, things that are only in St. Augustine are probably not going to get bid on--I hope that I have helped!!! Meghan, did you need some more stuff from me?? I wasn't sure if you wanted a bunch of miscellaneous stuff for posters or just newspaper type articles, etc.. If what I sent is ok, great, but let me know if you want more or different!! ok, I am super tired now and need to try and go to sleep--Have a great weekend everyone!!! Love Deb

Name:: Laura Stants
Email: laura@our-sma-angels.com
Date:: 03/16/04
Time:: 11:17 PM

Comments

The Journal is currently down for "maintenance", but we hope to have it back up and running within the next week. Thanks for your patience, and please check back soon! In the meantime, I have some information for you from Deb about upcoming events!

Garage sale: 4/3/04 and 4/4/04
Saturday and Sunday 7am-1pm on Sat. and 8am-noon on Sunday

Charity Night at The Grand Opening of The Outback Steakhouse in Davie, Florida
Monday April 26, 2004
4pm-1030pm

Name: Laura Stants
Email: laura@our-sma-angels.com
Date: March 30, 2004
Time: 04:52 PM

Comments

Just testing the journal to be certain it is back up and running. If you're reading this, it is! :)

Name: Debbie
Email:
Date: March 30, 2004
Time: 10:53 PM

Comments

Hi out there!! Oh, how i have missed you all!! I am soo glad that the website is back up and running--if anyone has any questions about charity night or the garage sale or the benefit please let me know and i will fill you all in lots more tomorrow!! LOVE LOVE LOVE~~

Name: Meg
Email: mvesey@flagler.edu
Date: April 02, 2004
Time: 12:15 PM

Comments

Hey Debbie, Glad to see that the website is up and running again. I was wondering if you have ever tried to run a golf tournament for a fundraiser, because we did that in my marketing class and it was a huge success, so let me know if you want to think about doing that. xoxo, Meg

Name: Debbie
Email:
Date: April 02, 2004
Time: 12:59 PM

Comments

Hello everyone!! Well, our garage sale is tomorrow and Sunday and we have a TON of stuff for sale!! Feel free to stop by anytime between 7am and 1pm tomorrow for a great deal or just to say hi!!! The new OUTBACK STEAKHOUSE pin that Jen Berman and I designed is being made as we speak and we will have 6 different designs for you collectors out there!! The pins are for sale starting April 26th at Charity Night in Davie.. Speaking of Charity Night, Outbacks Grand Opening in Davie/Weston starts at 4pm and ends at 1030pm on Monday April 26th--we will be there to talk about SMA, Payton, the thousands of children that are suffering or have suffered from SMA and we will have scrapbooks, brochures, pictures, and information for people to look at and take with them.. We will be selling the new Outback/Paytons Pals pin and HALF of the proceeds from the entire night will go to Paytons Pals!! This will be a huge night for us!! We are sending out invitations starting next week and we look forward to seeing everyone at OUTBACK!! The directions to the new restaurant are---Take Turnpike South to Sawgrass. Take Sawgrass to end, go 75 S. Your 3rd exit is Griffin Rd. East, take that exit as you come off the ramp on your right hand side you will see a Goodyear tire and a Burger King. Outback is the restaurant between the two!!! ALSO, we are working hard on auction items for the event in July--if you know anyone that owns a business or is able and willing to participate, please let me know (954-935-6025)!!! THANK YOU EVERYONE THAT HAS BEEN HELPING AND THAT IS HELPING!!! It just wouldn't be possible to put together an event like we do, without everyone pitching in and with all of us working together, we really make a dent in the campaign to CURE SMA!!! Love to all!!

Name: Lisa
Email: lisa_matticco@yahoo.com
Date: April 02, 2004
Time: 06:55 PM

Comments

Hi Deb, Rob and esp. Payton! I tried to log on a couple times last week to let you know that I’ve rec’d the packages - I see that Laura has been busy making updates to the website. I just read Payton's story III and I SO enjoyed the Disney pictures! I have bugged you for awhile for some new pics of Payton. I could not have been happier to see you, your family and especially Payton at Disney! I have not seen him since he was a baby and he is SUCH A BIG BOY NOW :)! I have known you and Rob for many years now (I think something like 26) and I just wanted to say that Payton has brought out the ABSOLUTE BEST in the both of you. Even throughout your pregnancy Deb - the excitement and commitment you both showed as parents to be was so tremendous and it has done nothing but GROW AND GROW. Not only for Payton as he is getting older but in your fight for SMA children. I have always loved you both (of course) but I SO ADMIRE who Payton has made you today, not only as parents but as individuals! Payton is one incredibly beautiful, smart, and strong little boy that has taught you, Rob, your family, your friends, co-workers, and everyone he meets how we can make a difference, how to understand what needs to be done to win this fight, and how important it is to educate people about SMA. The strength and determination in Payton has given us SO much hope and faith for a CURE. I really want to make it to the benefit this year – I’ve missed the last couple of years. Now that I am back in FL I should be able to come down. I talked to my boss and they are donating 5 NoteMap licenses with Annual Maintenance (tech support) for the auction. It is the best Outliner software out there – you’ve gotta go download it Deb. I think it could be completely helpful for you to keep all the benefit planning organized. I know they will set you up with a free license for Payton’s Pals too. Go to www.casesoft.com and download. In the comment section write my name and I will see that the license is set up for you. Our other software is mainly used by attorneys, private investigators and legal nurse consultants but NoteMap is a program that anyone can use (esp. great for students). I use it all the time for status reports at work and any other lists that I need. Thank you for the ideas on where to hand out the other packets – I plan on stopping at some local restaurants and shops in the mall. I will let you know how it goes. Give Payton a kiss for me. Have GREAT weekend at the garage sale. XOXO, Lisa

Name: Debbie
Email:
Date: April 05, 2004
Time: 11:50 AM

Comments

Hi guys--I just wrote an hour long entry and it didn't go through so I am SUPER DISAPPOINTED right now, UGH!! We had a super successful garage sale and had a 2 day total of $1033.00!!!!!--We were able to raise over $900 the first day and the rest on Sunday--SOO, we are going to do them on Sat. only from now on--even if we have to do Saturdays in a row, i think we will be better off than doing them on Sundays--it just seems that people are not interested in garage sales on SUndays--We have a considerable amount of stuff left over so we decided to do another one in 3 weeks! So, if i was unable to hook up with you or vice versa lets get together because i have an extra couple weeks now to get things together--Dionne, I will try to come by your work on Wednesday--let me know if that is ok!! I want to thank our HUGE group of Volunteers for coming out and supporting us--you guys are all incredible!! Carole, Ricardo, John N, Lori M, Hayden and Max, Jen B, Tori, Kelly, Heather, Tamara, John L, Talia & Becky, Jamie Joy, Jason & Oscar, Lauren & Jason, Lori C and Family! and THANKYOU to everyone that helped us buy purshasing something from our treasure of goods or by donating to our cause!! We had a great day and I want to also thank everyone that donated the items that we had for sale, without which we would not have been able to make this happen!! THANKYOU everyone for all your HELP!! LISA, I want to thank you for your wonderful and positive comments--it's definitely things like that, that keep us truckin' along--You have been my friend since I was 9 years old ( i still can picture us all playing "patrol" in my parents house!!) and we are very lucky to have friends like you, that we have known for so long and so well, that it feels more like family!! I can't wait to see you guys and I SOO hope you can come down for the benefit this year!! Payton got to go to the movies yesterday!! We took him to see "Bust A Moo" It was super cute and he loved it!! I am really hoping that Shrek 2 is out for his bday party--He really looking forward to that movie!! Well, take care everyone and thanks again, for the incredible amount of support in our fund-raising, awareness raising, child saving efforts!! LOVE Deb

Name: Debbie
Email:
Date: April 08, 2004
Time: 09:39 PM

Comments

Hi everybody!! I am very excited bcuz I just got an A on my 4th A & P test!! Wish me luck to get an A in the class!! I am really looking forward to Charity Night and I have been working on invites and brochures and stuff all week--If anyone needs info about that event or any other event, just give me a buzz or email--We are making up new Paytons Pals t-shirts, sweats, tanks, etc.. for the benefit in June so if anyone has any suggestions for color or style let me know that too--I have had a ton of people ask about the jersey shirt with different color sleeves so I will definitely have Rob make those too--Payton had a GREAT day and told me that tomorrow he wants to go outside! I am so excited--we have the best time going outside!! SOmetimes he is too hot though and then he wants to go back in, but for the most part he is thrilled to have different scenery and being moved around etc.. I think the sunlight must be so good for him too--Well, I guess that is it for now--LOVE LOVE LOVE

Name: Debbie
Email:
Date: April 12, 2004
Time: 09:58 AM

Comments

HAPPY BELATED EASTER EVERYBODY!!! I had to work all day yesterday but Payton spent the day at grandma and grandpas with daddy also and he spent FOUR hours on his new swing-swinging and checking out cars and people and then checking out the house and talking to everybody--he had such a good time that he didn't want to get off and was up there for the better part of their day--then he went on a mini egg hunt around the house and found about 10 eggs that had little cars in them (the kind that he can hold in his hands) and money and i think that is it--it stinks to miss the day with them but i have to take so many days off this month and next month for fundraising and other events that i just work would not have thrilled with another day off & a holiday no less--NEXT Easter I will try to be off--But, PAYTON had an incredible day and that is all i care about--he loves going over to grandma and grandpas house so we will try and go again next weekend! He LOVES THAT SWING!! ok, well i hope everyone had fun this weekend with the holiday and i will be back soon--

Name: Debbie
Email:
Date: April 12, 2004
Time: 11:32 PM

Comments

Hey out there! I just found out that 60 Minutes II will have a story on pre-implantation genetic diagnosis (PGD) and an sma couple will be featured--they lost a son to sma type 1 and had a healthy child through PGD--this is really spreading awareness about SMA--be sure to watch if you can--I believe it is this coming week--I have so much going on right now and sometimes it is hard to think straight but it seems to me that as time goes by--the drive to help children that are sick or disabled intensifies for me--I feel everyone around me getting involved and their emotions and their desire to help fuels mine like you can't imagine--i have a lot i want to accomplish but with all of your support and Payton by my side i know we can do so much--I will continue to give and give and do everything i can to be a part of the solution to the problems these children face. No matter what it takes, they are worth it--It is raining(pouring) outside and perfect for sleeping--Goodnight everybody

Name: Dionne Ryff
Email: dryff@alliedadvpub.com
Date: April 14, 2004
Time: 10:52 AM

Comments

The 60 Minutes SMA story airs tonight (Wednesday)!! Tune in!!

Name: Debbie
Email: mvesey@flagler.edu
Date: April 14, 2004
Time: 10:57 AM

Comments

Hey Debbie, I have just been in contact with the man at Carolina Club about the golf tournament, I have some things to tell you about it. We need to pick a date, and some other things. I am not sure if I want to stress myself and you over this with finals coming up and everything, but email me and we'll see what is going on. I get home for the summer a week from Thursday. I hope all is well. Xoxo, Meg

Name: Debbie
Email:
Date: April 15, 2004
Time: 12:25 PM

Comments

I have really IMPORTANT NEWS--I just found out that the DAVIE OUTBACK OPENING has been set back ONE WEEK--so the restaurant will be holding its GRAND OPENING/CHARITY NIGHT on MONDAY MAY 3rd--2004--I am soo soo sorry if this is inconveniencing anyone--they are having construction issues and had to set back the opening AGAIN--We are re-doing invitations and sending the majority out to businesses in the DAVIE/WESTON area so if you would like directions or more information please email me directly at pjf714@msn.com Again, i am so sorry and we will definitely be opening and having CHARITY NIGHT for PAYTONS PALS on Monday May 3rd--LOVE LOVE

Name: Debbie
Email:
Date: April 15, 2004
Time: 10:59 PM

Comments

Hey out there--I want to reiterate the new schedule for the Davie OUTBACK OPENING and CHARITY NIGHT! It has been changed to Monday May 3rd, 2004--THANK YOU FOR YOUR PATIENCE!!:) Also, Megan, call me when you get back after finals and we will go over details etc.. for a golf tournament in the future-- You have to come over when you get back into town! Payton is doing great and looks forward to each new day so that we can either go out or go outside or play a new game or read a new book or just plain talk away--now that he has gotten older he seems to look forward to the new day and we try to fit as much fun as possible for him--driving to PT is fun too but PT itself is NOT fun--He is going to see his pulmonologist next week so we will see how his weight etc.. is doing and he should be getting his gtube replaced--I have my last few tests over the next two weeks in school and then i will be back in the fall ( can't take summer classes because the classes are crammed into shorter terms and you must be able to go to school more than one day a week and to jam all that inover the summer right before the benefit is not smart) So, I will be taking A&P 2 in the fall but applying to the nursing program this summer--I am so looking forward to Paytons Mommy being a Registered Nurse.. Wish Me Luck--

Name: Debbie
Email:
Date: April 19, 2004
Time: 11:46 PM

Comments

I just want to wish Lori Mawhinney a happy belated 35th BIRTHDAY on the WEB!! We had such a great time celebrating the "big one" with you & don't worry--you still look like you are in your twenties!!! I LOVE YOU--YOU ARE ONE OF THE GREATEST FRIENDS ANYONE COULD EVER HAVE!!! Hope you enjoyed your day!! I will be back tomorrow--I just got home from work and am SUPER tired--Love to everybody--

Name: sandy Hawkins
Email: sehawk777@juno.com
Date: April 21, 2004
Time: 09:00 PM

Comments

Hello my name is Sandy, and my husband Carl delivers to Rob's shop each and everyday. I asked Rob for some information on Payton and he gave carl your letter. i have cried and prayed for payton everyday since. i read his story to my church and have placed him on our prayer list. i also emailed everyone in my address book his story and have asked for prayer and any donations that could be given. i left your website with them also. i will be trying to get my boss Jim and Ann Woolard to donate some memberships to Jim Woolard's World Gym, for your auction. i will let you know when i find out what they will do to help. i would also like to ask them if you (me) can put containers in the clubs with Paytons picture on them for donations. I don't know what the rules are on that but i will find out. i think my cousin said he went to your website and emailed you also. we are praying for you. i would like to get involved with you in any way i can. we live in Boca. rob can get my cell from carl, please call me. thank you sandy

Name: Debbie
Email:
Date: April 22, 2004
Time: 12:58 PM

Comments

Hi Sandy! Thanks so much for writing and for all you have been doing! Spreading the word about SMA is the most helpful thing that anyone can do and you have already done so much of that! There are several ways that you can help and it seems that you have a great idea of what they are because you have already started doing the things that we need!! Prayers are always helpful--We'll take as many as we can get!! Donated items for the auction, people making donations, people buying ads in the auction booklet, people coming to the event in July--these are things that we work the hardest on--We have been super fortunate with friends and family and we have more volunteers than i even need for the actual night of the event--but i could certainly use some help getting things donated--like the gym membership you spoke of--that is EXACTLY what i ask everyone to do--Go to the people you KNOW--people that you work with or work for and ask them if they can help out--Sometimes they can & sometimes they can't--Don't feel rejected if they cannot because it is just not always something people can do--& the people that DO help more than make up for the ones that cannot--The items that we have on the auction raise thousands and thousands and thousands of dollars for sma research--We had about 150 items last yearon the silent auction and probably 10 on the live auction and maybe 30 or so on the raffle--there is LITERALLY something for everyone--ALSO, if anyone would like to come to the event--that is also a HUGE help--The cost is $75 per person and that includes complete dinner by OUTBACK STEAKHOUSE (steak or chicken with bloomin onion caesar salad dessert) and completely open bar with beer wine and liquor all donated by local liquor beer and wine distributors--We have lots of really cool stuff to bid on throughout the entire evening--music by 97.3--a LIVE AUCTION with a real auctioneer--a quick clip that has info about sma and a short speech by a well-renowned Geneticist at the University of Miami. We will almost definitely have some sort of UM athletes there (whomever is here in the summer) and lots of things to do in between--the night is VERY FUN and uplifting and you also get to meet PAYTON!! We make it a celebration of hard work and a promising look towards the future for children to beat SMA--Everyone that i talk to seems to enjoy the night so much that they look forward to it every year.. SOO, as far as help--I need items for auction, guests that would like to attend and ads in the auction booklet--there is info on our donation letters about the auction and on the invitation is the information about attending--purchasing a table(and getting an ad on the table & in the booklet) and putting ads in the booklet--The invitation will be going out within the next few weeks and if you know anyone that i should send one to, please email me their address: pjf714@msn.com WE appreciate EVERYTHING that everyone does to HELP SO MUCH!!! THANK YOU & TAKE CARE!!! PS>> ROb has told me about Carl & he thinks he is the absolute greatest!! PSS... Payton has not been feeling good--he has stomach issues the past two days and actually had some vomit the other day which threw me into a panic and is not usual for him--BUT, that passed and i think he may have had an upset stomach--He lost weight this past month and needs to gain that back and get back to himself so we are working hard on that--Love to everybody-- PS.. CONGRATULATIONS AMY on getting your MASTERS DEGREE!! That is SO great--You worked so hard and you deserve it--ENJOY being such a SMARTIE!!:)

Name: Debbie
Email:
Date: April 26, 2004
Time: 11:34 PM

Comments

Hello everyone--I am SUPER excited because the pins that we had made JUST came in today--they are full fledged OUTBACK STEAKHOUSE/PAYTONS PALS pins and they are on sale for $5 a piece--please let me know if you would like to order any!! They come in a couple different colored backgrounds and if you'd like to see it first email me and i will email you a pic!! The different colors that we have are pink, orange, blue, red, green, and purple--they are all collectors pins but the purple ones are fewer and limited edition--They are $10 a piece, but all the other ones are $5-- Well, Payton is doing MUCH better--he seemed to have a stomach flu or something along those lines cuz after 24 hours he seemed to back to his old self--We are being careful with feeding obviously but he looks a thousand times better--Well, we are getting super excited about the benefit and organizing it--Let me know if you have any ideas--Also, we decided to do the garage sale THIS weekend--it is sort of last minute but if we don't do it this weekend we will pretty much have to wait til next year--I am going to be collecting stuff this week so if anyone wants me to come by let me know--It will be a smaller sale this time but still pretty big by normal standards--Love to everybody--have a great week!!

Name: Jennifer
Email: Jennifer@dtrtinsurance.com
Date: April 27, 2004
Time: 09:54 PM

Comments

Hey Debbie. I wanted to say hi. I still was unable to open the donation letter email that you had sent. On another note, I am working hard on getting a bunch of people to go to the Outback Grand Opening. So far we got me and Rodd, my two friends that are staying with us from North Carolina, and like 4 of my co-workers and their whole families. Also my mom as well and probably her boyfriend. Can you give me a call about the ads for the booklets because I am almost positive that my bosses would advertise and I could probably see if Rodd's boss will too. I have a new cell #- 954-695-1768. Also, we should definitely be able to stop by at the end of the benefit- hopefully the last hour or so. We definitely need to get together a little closer towards the event. I have been saving bags for you all year long to have with the t-shirts and stuff you are selling. Also, I will ask everyone at my work about the pins and try to get everyone to buy one. Can you email me a pic so I can show them and then I can get the $ from them and then swing by and we can exchange. What day are you have the garage sale this weekend? Well I hope Payton feels better. Talk to you soon! Love, Jennifer

Name: Deb
Email:
Date: April 28, 2004
Time: 04:46 PM

Comments

Jenn, i just emailed you--let me know if you don't get it--

Name: Dionne Ryff
Email: dryf@alliedadvpub.com
Date: April 30, 2004
Time: 08:03 PM

Comments

Hi all! We've come up with a new contest for this year's benefit - design a logo for the 4th Annual Outback Spring benefit. Winning design will be printed and sold on our t-shirts at the event on July 24th! Contest is open to anyone, so pass the word on! We are looking for a design that incorporates the slogan "Say G'Day To Cure SMA"; Outback Steakhouse, Payton's Pals, SMA and South Florida. Winner will receive a pair of tickets to the July 24th benefit, a year of free advance screening movie passes for Paramount Pictures films and an Outback Steakhouse gift certificate (plus their design on our 4th annual t-shirt!!!!) Anyone who is interested should visit our website to learn more about what Payton's Pals is all about. Entries can be sent to via e-mail to pjf714@msn.com or to Debbie Freeman at Payton's Pals PO Box address (which Debbie will need to add to this message.) Deadline to receive entries is July 1st. This should be a fun and interesting contest PLUS it helps us get the word out to so many more people about SMA!! So get those creative juices flowing!!! Good luck!!

Name: Debbie
Email:
Date: May 03, 2004
Time: 12:51 AM

Comments

ok, it has been a CRAZY weekend--The garage sale on Saturday was not quite what we are used to--but we were still successful with $305 raised!! THANK YOU Carole, Heather & MOM for doing the "leftover" sale with me!!! We had a good time and then got rained out around 1130 so it didn't last long--Fortunately we have just enough money to cover our pins and the things we need for Charity Night and some of what we need for the benefit! If anyone would like one of our BRAND NEW Outback/PaytonsPals/Say G'day to Cure SMA pins, let me know! THey came out great!!Work was busy tonight and tomorrow is CHARITY NIGHT at the NEW OUTBACK IN DAVIE!! We are SUPER excited about this--I am pasting the directions here on the web--& if anyone would like to come by, please do!!Take Turnpike South to Sawgrass. > Take Sawgrass to end, go 75 S. > Your 3rd exit is Griffin Rd. East, take that exit > as you come off the ramp on your right hand side you will > see a Goodyear tire and a Burger King. > Our store is the building between the two. Well, Payton is doing well--So much better than last week and his formula is back up to normal--thank goodness--he looked really cute and with really nice color in his face today--he must be excited about tomorrow!! He is going to be having dinner up at the Davie Outback with his dad and grandma and grandpa tomorrow so he is happy about that! I am SUPER tired and ready for a mini break so after Charity Night I think I will take a day with my mom and celebrate Mothers Day in some relaxing fashion--Not sure yet what, but whatever it is, I am looking forward to it--I haven't gotten my grades yet, but i am pretty sure that i was within a few points of an A in BOTH my classes (A&P lecture and A&P lab) so we will see--but more than likely i have a B in both classes--I can't say i am happy about that or that i wasn't EXTREMELY disappointed but i am ALL or nothing--can't help it--always have been like that--so i shoot for a's & get a little down about anything less (for myself anyway)and while I know that is ridiculous--i still get bummed--Oh well, there are much bigger things to worry about--Time for some sleep--hope all of you are finding peace and harmony in your own lives--it seems that at the end of the day, it is nice to have some of that-- >

Name: Debbie
Email:
Date: May 04, 2004
Time: 12:28 AM

Comments

WOW!!! WHAT A NIGHT!!! We want to thank the staff at the new Outback in Davie, Florida for the most amazing opening ever!! And Claude Delucia (the partner), Maria, Shay Wilson (manager), Sid (manager), Casey Rockerman (JVP) and everyone that was involved in the opening and in having Paytons Pals be the beneficiary of Opening Night!! We had such a great night and such a great turnout--it was just a wonderful event!! The night started out a bit scary because of all the rain and tornado type dark clouds and storms all around us--most of us had to drive through torrential downpour to get to this Outback--BUT, as the night progressed we were packed and even went on an hour wait around 7pm--it was fabulous!! I am not sure of how much they raised in total but it was surely in the thousands--THEN, we were passing out brochures, talking about Payton, selling pins, tshirts and teddy bears and we raised an additional $875 on top of everything Outback is donating--IT WAS INCREDIBLE--there was a HUGE amount of support on behalf of the Outbackers there and the customers were just as curious and extremely generous in their spending, donations and just over-all concern for Payton and kids like him--Payton came in around 7pm and had dinner with Rob and my parents and we got to sit and have dinner with them while they were there (we worked in shifts at the front) --the coolest part is that i asked Payton if he was having fun and he immediately said yes! and then i said do you want to come and see Mommy at work again? and he immediately said yes! it was VERY cute--Well, as you can tell it was a great night and we are very lucky to have so many great friends and family that are sooo supportive and ALWAYS there for us--WE LOVE YOU GUYS MORE THAN YOU COULD EVER KNOW--it is beyond my capability of explaining how amazing it is to me that so many of our friends could be soooo generous with their time and soooo wanting to see a cure!!! It is definitely part of what keeps us strong and able to do what we do--We could NEVER thank everybody enough--Goodnight and thanks to all that help us out:)

Name: Debbie
Email:
Date: May 04, 2004
Time: 12:33 AM

Comments

Name: Dionne Ryff
Email: dryff@alliedadvpub.com
Date: May 04, 2004
Time: 08:47 AM

Comments

Debbie - You are always thanking everyone for their support and hard work and I just wanted to take a moment to say thank you to you and Payton and your entire family for allowing us to all be a part of your family and a part of your cause. You guys are all amazing and I am proud to be one of Payton's Pals!!! PS -- Last night at the new Outback was awesome and can't wait to hear the grand total!!! I recognized a lot of the people there and I have to say you have an amazing team of supporters!!! Congrats on another awesome event!!!

Name: Debbie
Email:
Date: May 04, 2004
Time: 10:36 PM

Comments

Hi Dionne! Thank you so much for your very kind thoughts--we would not be close to a cure if it weren't for the THOUSANDS of supporters out there that truly want to see a cure for sma--i couldn't do anything without all of you so to me, i really can't thank everyone enough or give back enough--i just hope that you can count on me when you need me as much as i have been able to count on all of you--i love all you guys and i feel we just have this HUGE extended family!! It is my pleasure to share Payton with the world and spread the word about sma--& thank you for letting us--Goodnight everybody--

Name: Debbie
Email:
Date: May 06, 2004
Time: 11:19 PM

Comments

Hey everybody!! I am waiting on a total from the Davie opening so i am not sure yet, but i will let you know when i find out!! We are all getting very excited about the benefit in July! My mom and I are taking a couple hours together to celebrate Mothers Day in relaxation on Saturday and then on Sunday i have to work from 10am to about 4 or 5pm and then I am going to have dinner with my super star son and mom and dad and husband and grandma and maybe uncle--It should be a nice relaxing weekend--Hopefully anyway! I want to say thankyou to my niece ASHLEY for my first Mothers Day wish that i got today!! My card is beautiful and i love that you wrote it out to me!! Please wish your mom a HAPPY MOTHERS DAY FROM ME AND FROM PAYTON TOO!!! Well, work should be busy tomorrow with it being Mothers Day weekend--hopefully it will be crazy--Have a great weekend everybody--esp. you MOTHERS out there!!:)

Name: deb
Email:
Date: May 07, 2004
Time: 10:49 AM

Comments

Hi out there!! I want to say THANK YOU to my beautiful mother in law for my wonderful Mothers Day Card and my Gift too!! That was very cool of you guys and i will enjoy it THIS very weekend!! My mom and i are going to spend some time together on Sat. for a couple hours to relax and have a pedicure/shop type day--WOW am i looking forward to that!! Payton is looking forward to dinner on Sunday at Grandma and Grandpa's house and we should have a great time--ALso, Survivors' last episode is on Sunday so we will have to tape that--:) Well, i will be back--have a great weekend everybody!! PS..We have already received a couple samples of artwork from people working on the design logo for this years event! It is very exciting to see how creative people can be! Be sure to email me if you have any artwork that you have come up with!!

Name: Jamie, Ryan & Reese
Email: RyJam282@bellsouth.net
Date: May 09, 2004
Time: 07:40 AM

Comments

We just wanted to wish Debbie a Happy Mother's Day. We hope you enjoy your day. We love you!

Name: Tracy & Sky
Email: Ourlilsky@aol.com
Date: May 09, 2004
Time: 09:28 PM

Comments

Deb, we couldn't let the day end without telling you..HAPPY MOTHERS DAY!!! Sky sends hugs!! www.our-sma-angels.com/Skylar www.caringbridge.org/pa/skylar P.S.. 80's this week!! YIPPEEEEEEEE

Name: Debbie
Email:
Date: May 10, 2004
Time: 10:37 PM

Comments

OH MY GOODNESS--I am SO UPSET--I spent 20 minutes yesterday writing this whole big Mothers Day journal entry and apparently it didn't "take" and now it is just NOT HERE. Oh, this has happened to me so many times and it is just so annoying--ANYWAY, i won't write the whole thing over but i wanted to thank Jamie and Ryan and Reese and Tracy and Skylar and Holli & Troy & Ashley and My MIL Roz, and My Mom and every wonderful mother out there for being the moms that they are and for my mothers day wishes--I had a great weekend and spending my fifth (including when i was pregnant) Mothers Day as a mom as Paytons mom was just plain fantastic and i got to be with my own mom which is a blessing and also fantastic and i just felt very lucky--HAPPY MOTHERS DAY TO ALL YOU MOMS OUT THERE--You all deserve to have this special day (& many more) to celebrate all you do and how wonderful you are--LOVE LOVE LOVE, Deb:)

Name: grampa
Email: raymond freeman @ el paso .com
Date: May 12, 2004
Time: 10:56 AM

Comments

rob debbie and payton hope all is well have not talked with you in a while. sounds like your little man has been keeping you busy. wish i could be with you. love grampa

Name: Talia
Email: ltjgal555@hotmail.com
Date: May 15, 2004
Time: 11:19 PM

Comments

Debbie, I feel like I haven't seen you in forever! and I miss you, I have to come over and see my boy! I miss him, I'm glad that everything is going well. Tell Rob Hi for me and Give my honey and HUGE kiss! I love you all, the three of you are the most amazing people!

Name: Debbie
Email:
Date: May 16, 2004
Time: 11:35 AM

Comments

Hi Ray!! We wish you could be here too! You should come down and visit us sometime! The weather here is pretty much perfect year round so anytime is a good time!! It is great to hear from you--say hi to Wilma for us!! Talia, i feel that we have been missing each other!! I have been working on stuff for the benefit just about every single day--getting organized and putting stuff together, mailing out letters and thankyous and with each year i definitely feel more and more organized--it is a good feeling!! We are really getting there!! I have just set three dates to go out and "pound the pavement" for auction items--June 5th--June 19th--July 10th--if anyone is interested in joining us, please feel free to come along--we actually have a great time and once you get into a groove it feels quite exhilarating!!! Different people can go on different days but those are the three days that i can go-so i am looking forward to that-and then we have a meeting for the board next week--we will be deciding exactly what we want to do with UM this year and next and lots of details about the actual event--People have really been working hard on auction items this year and it seems that we will have a REALLY EXCITING auction this year--i am so excited for everyone to see it--There are a couple items that we are "in search of" so if anyone knows anyone that could help with the following items that would be HUGE!! We are looking for:1- A nice piece of jewelry for the live auction 2-ANY Signed sports memorabilia (we can never have enough of that stuff for our sports fans!) 3-Tickets to any live event 4-Gift baskets of any kind THANK YOU SO MUCH FOR ALL OF YOUR HELP EVERYBODY!! We are taking Payton to see SHREK 2 this week-- he is beyond excited!! Yesterday he showed me that he can count to ten and i have a feeling he can count to twenty but we will go slowly--I was very proud of the counting to ten--i think he knows so much more than we realize and i cannot wait until he has just the right communicative device since what he has is a joke--hopefully that will all change over the next three months as we are making some changes to his therapy and to his teaching,etc.. it is so hard to manage everything that is supposed to be in place to help Payton and there is so much "politics" within the "system" that is ridiculous and you just don't have the time or the energy to fight all the time but in the end you have to do what is best for your child and sometimes that means fighting--ANYWAY, Payton is fine and happy--& he will be enjoying new learning challenges throughout the summer and hopefully will be right where he should be by the end of this year as far as the skills that he should be able to acquire with his limitations---Have a great week everyone!!!

Name: Amy Barnett
Email: lilyandnathansmom@yahoo.com
Date: May 16, 2004
Time: 07:30 PM

Comments

My goodness Deb! Time just slips away from me and now here I am trying to catch up on your journal! Things here are GREAT and Miss Lily is doing fantastic! I am with you on finding a better communication devise..currently we are working with a cheap talk but that is NOT the greatest out there. I want to eventually work up to a Dynavox but that is future :) I WISH I could see pictures of Payton (hint hint)....you can go to www.caringbridge.com/ky/lily to see some current pictures of her there (I need to send some new ones into Laura..something else to add to my to do list). HUGS to you guys and give Payton a hug and kiss from us please! Yourself too :)

Name: Meg
Email: mrosevesey@hotmail.com
Date: May 17, 2004
Time: 06:46 PM

Comments

Hey Debbie, I haven't talked to you in forever. Everything has been pretty busy since I got home from school. I have been teaching swim lessons everyday since I got home, and between that and babysitting there hasn't been time for much else. Not to mention that one of my best friend's mom was put onto hospice care a week and a half ago. Anyway, I will see what is going on about some auction stuff some one I am working with is able to get together for me. I hope all is well with Payton. See you Wednesday, XOXOXO, Meg

Name: Jennifer
Email: jpnlg@bellsouth.net
Date: May 19, 2004
Time: 06:28 PM

Comments

Hey Debbie. I wanted to know if you have a place to keep furniture and stuff for future garage sales. We had to move my Grandma into an assisted living place and so we have a lot of her stuff to get rid of so please let me know bc i would love to donate it to you :) Give me a call in the next day or so because I will be going to clean out my grandmas place. Love, Jennifer P.S. My cell is 954-695-1768.

Name: Debbie
Email:
Date: May 20, 2004
Time: 11:02 PM

Comments

I want to wish my mom a VERY HAPPY BIRTHDAY!! We celebrated her 53rd with Payton and we all had a great time!!

Name: Debbie Freeman
Email:
Date: May 26, 2004
Time: 10:20 PM

Comments

I want to extend my deepest sympathy to my sister in law Jamie Withey and her family, whose great grandmother just passed away--the funeral services are tomorrow & the Simpson family is a very close tight knit loving family--i know Cassie will be missed very much and that she shared much love while she was here on this earth--Jamie, we are thinking about you--

Name: Debbie
Email:
Date: May 26, 2004
Time: 10:20 PM

Comments

Heylo out there--Well, i have to admit, now that school is over i feel much less stressed--even with the benefit coming up--it is hard to do it all, no doubt.. Work has been good & my friends & coworkers have REALLY been helping me spread the word about SMA and about the benefit and the help we need etc... The organization itself seems to have grown "legs" like my mom says, and people are starting to become familiar with Paytons Pals or Payton or sma and things have been, for the first time since we started, bigger than us--it is hard to explain but when people who we do not know personally, are familiar with Paytons Pals and what we are doing (which has happened a handful of times this year) it seems as though it is just bigger than all of us--which is exactly what we are striving for--I want people to know sma the way they know cystic fibrosis or maybe better than they know cystic fibrosis--------Payton went to see SHrek 2 last weekend with us and believe it or not, he hated it--he really gave it a shot and lasted about 45 minutes before he started to really yell (paytons yells are loud but not scream loud) and it was so weird because for the first time in four years i found myself about to SHHSH my son and i stopped myself and really didn't know what to do--we have never had to tell Payton to be quiet!! I don't think he would even understand what that means! Either way i just couldn't do it so we went for a walk and i asked him if he wanted to watch the movie--he said yes, so i told him that there were other people in the theater that wouldn't be able to hear it if he was talking so he would have to be quiet during the movie--he said ok--we went back in and as soon as i sat down, he started yelling--he wasn't happy and instead of just falling asleep as Payton has always done in any uncomfortable or scary or annoying situation--he was letting me know that it was time for us to GO!! it was actually pretty funny and as soon as we left he was fine--SOOO NO SHREK 2 PARTY I GUESS!! There was a preview for a really cute shark movie that i think he will like so we are thinking we will go with that one for his fourth bday--Have a great night all--

Name: Debbie
Email:
Date: May 27, 2004
Time: 06:52 PM

Comments

HI guys--We just found out that our insurance company has cut Payton off from the $2000 per month RSV shots that he has gotten since he was 6 months old.. Now, obviously there is no way that we are paying for those shots---and there are people/docs who think that Payton is not at risk for RSV anymore---although there are people/docs who think that he is---but in the end we will just have to forego them and hope for the best--My personal opinion is that the insurance company had a meeting and saw that Payton has not spent one single day in a hospital since he gtube insertion so they probably figure that he is in better shape than he really is--OR, they figure we won't take him to the hospital anyway (Since so many sma children spend multiple days & have multiple visits in the hospital)--OR, they are just rolling the dice since the shots are so expensive--THey have pretty much cut us down now to hospital visits, emergency room visits, partial payment of doc visits and feeding tube supplies (not the pole that holds the tube or the special formula that goes in the bag that costs over $300 a month) and feeding bags (we recently had to go through appeals and fight to get them to continue to pay for the bags) ANYWAY---what a fun job that must be huh?? "yes, maam, I know that your child is terminally ill, yes, yes, and we also understand that you send us $800 a month, but ya know what, we don't really care about that--we care about our bottom line so we are going to deny benefits" NO--THEY DID NOT REALLY SAY THAT TO US, but you know what?? THey might as well-----SOOO, what else, i have been thinking about writing a book lately--a friend of mine has inspired me to start one and if it turns into anything interesting i will let you know--it could take quite a while to get it all together but i'd love to share with the world what is REALLY going on inside the world of sma/medicine/docs/insurance/sick kids/their parents, etc.. I haven't decided if i want the book to be about the bureacracies that sick kids/people have to deal with or just our story--but either way i will let you guys know--I figure the more i can spread the word about sma--THE BETTER--I just got this new back brace to try and sit straighter (totally different subject i know).. Anyway, I am in pain from wearing it--i guess my posture could use some tweaking:) Well, Payton had PT today and we found out that his very supportive staff at NORTHWEST MEDICAL REHABILITATION CENTER will be at the benefit in July--it is SO Great to see so many people wanting to support Payton is his fight for life--THERE WILL SOON BE A TREATMENT FOR SMA--Did anyone see the movie "Miracle" yet?? VERY GOOD MOVIE--makes you realize that with great planning and HARD HARD WORK, YOU CAN DO ANYTHING--Believe it, cuz it is true guys--Love to you all, Deb

Name: Jennifer
Email: Jennifer@dtrtinsurance.com
Date: May 28, 2004
Time: 08:00 AM

Comments

Awww... That is really messed up about the insurance. It's unbelievable how society works. The rich get richer and the poor get poorer. I hope everything works out okay. Me and my mom are gonna rent that movie Miracle tonight. I hope it's good. I am not really into sports movies although I loved Remember the Titans. Well I am very excited about coming to the benefit even though it's gonna be closer to over by the time we get there. Why does my brother have to get married the same day? J/K. Well I hope all is well. Say hi to Payton for me :) Love, Jennifer

Name:
Email:
Date: May 28, 2004
Time: 08:56 AM

Comments

Name: Jamie, Ryan & Reese
Email: RyJam282@bellsouth.net
Date: May 28, 2004
Time: 09:16 PM

Comments

Rob, Deb & Payton, we just wanted to say Thank You very much for your beautiful flowers at my great-grandmother's funeral. That was very special to us and I know she would be thankful for your kindness. Thank you for coming Rob, it really meant alot to us. I hope everything works out with your insurance and I am so sorry that you have to live through this. They will never understand all the hard work you do to keep Payton comfortable. I also want to say Congratulations to Holli and Troy on their engagement! We love you guys and we will come see Payton soon. Reesie misses him!

Name: Debbie
Email:
Date: May 30, 2004
Time: 10:01 AM

Comments

Hello everyone! Jamie, i hope things are ok-Rob said the services were wonderful for your great grandma & that she would have been pleased with the outpouring of love & also that Rons' eulogy was beyond words-we love you guys too and would LOVE to have Reese come visit anytime! Ya know Paytons movie party is soon--hopefully you guys can come down for that--also, we should try to all have dinner together maybe the night before the event or maybe the night after since everyone will be in town--My brother and his family will be here & my sister is trying but probably won't be able to come this year (her & Brian are in California) plus of course Roz, Bill & Holli and Troy--we will have to do some planning:) Payton got to go to TOYS R US yesterday!! He had the BEST time and since the toys are all at kid level, he can really check things out and pick things out that he likes--they came home with a couple shrek toys/stuffed animals and a Cat in the Hat doll--he hasn't been watching that so i am not sure how that one happened but he is familiar w/cat in the hat though--Work was not so busy last night--seems that Memorial Day weekend is a weekend for "getting away" cuz they sure weren't at the Outback--I want to say HAPPY 40th to CINDY SAGE!!! HOPE YOUR BIRTHDAY IS A BLAST!!! Also HAPPY BIRTHDAY to our dear friend Ralph who just turned 87 the day before yesterday!! I have been working on the details of the benefit--getting invitations worked out--etc. etc.. I will post when they are in the mail--have a GREAT LONG WEEKEND EVERYONE!!!

Name: DEBBIE
Email:
Date: June 01, 2004
Time: 10:18 PM

Comments

OK< I KEEP FORGETTING TO POST THIS: CONGRATULATIONS HOLLI AND TROY ON YOUR ENGAGEMENT!!!!! I/WE ARE SOOOO HAPPY FOR YOU GUYS!!! Also, i am very much looking forward to the wedding--i hope i can go!! I know that ROb of course will be there no matter what-i just hope that everything works out so that i can go too! ALSO, I meant to tell you Holli--Payton got his Shrek doll that you got him for being able to count to ten! HE LOVED IT! Rob brought it home and he put it under his arm and i asked him do you like your new shrek doll?? And he said yes, and i asked him, do you like holding your new shrek doll? And he said yes! It was VERY cute!:) ok, well i just got home from work--it was not too busy but not totally dead like we thought it would be--Payton is sleeping and i am looking forward to tomorrow and spending the WHOLE day with my super star kid-- Have a great night all--

Name: Debbie
Email:
Date: June 02, 2004
Time: 10:58 PM

Comments

Andrea & Morrie & Honey, I just wanted to let you all know that we are keeping your entire family in our thoughts--We are so sorry for your losses over these past few months--

Name: Debbie
Email:
Date: June 04, 2004
Time: 11:05 AM

Comments

ok so things are coming along for this years event--Invitations should be going out by the end of next week (that is 6 weeks prior to the event) We are going to send them out earlier next year to give people more time with the auction booklet stuff and emails etc.. also to give the printer more time to put the book together & also just to have more time and more notice for people--i am thinking at least 8 weeks prior next year--Anyway, we are working hard on auction items and we have already almost 80 items for the auction!! We have some really great great stuff this year too--We haven't even gone out yet to ask in the community but we are going this weekend and several days up til the event--If anyone is aware of a business or someone that might be able to help with the auction, let me know and we will stop by--we will be in the Boca area tomorrow and over the next couple weeks and then we will be in Coral Springs and MAYBE a bit in ft lauderdale but that is only if there is time--THANK YOU SO MUCH TO ALL OF YOU THAT HAVE BEEN HELPING WITH THIS AUCTION!!!! It is really so much work (probably the most work of the entire event) and everyone really has been amazing in their efforts with the auction!! THANKS GUYS!!! There are some drug trials going on now and there will hopefully be some new information about a treatment for SMA soon!! We are hearing that it is possible for a treatment within the next 3-5 years with the proper funding, so lets Help Make It Happen!!! LOVE LOVE--have a great weekend & wish us luck!!:)

Name: Jennifer
Email: Jennifer@dtrtinsurance.com
Date: June 06, 2004
Time: 09:38 PM

Comments

Hey Debbie. I left you a message as well earlier today. I went to my Grandmothers apartment today. Basically we have a nightstand and a dresser left. My friend is gonna take the entertainment center. Please give me a call in the next day or so and let me know if Rob's friend wants it or if you guys have room in storage for your next garage sale. Thats so awesome about finding a cure in the next few years. I will pray for you guys! Well gotta get going to sleep. Love, Jennifer P.S. You can call me at work- 954-772-8232 ext 305.

Name: Debbie
Email:
Date: June 08, 2004
Time: 10:33 AM

Comments

Hello out there--Jenn, I just left a message with Christine at DTRT--give me a buzz whenever you can--Sooo, lets see--this weekend was a serious bummer--We were very excited and had Payton all pumped up about a friends sons' birthday party (HAPPY 5th BIRTHDAY MAX!!!)--Max had even asked Payton over the phone to go to the party and Payton answered yes! He was very excited about seeing the other kids and going to the reptile show, etc.. and honestly we talk and talk about upcoming events so he ends up getting SUPER excited--I told him the night before to get a good nights sleep so that we could get up early for the party--he slept like a baby--SOO, we get up and it is so nice and sunny that i decide to wear shorts & a tank top--well, as i am getting coming downstairs from getting dressed i hear what sounds like a hurricane outside--i open the door--DOWNPOUR--ok, no problem, it is south florida and it rains all the time and it will surely be over soon like usual--(although this was like the first rain in 6 months) SOOO, we wait and after about 45 minutes we get a slight drizzle and we decide that is ok to at least get him loaded in the car (we have 4 pieces of equipment for him and two back up batteries-one that weighs 40 pounds) SOOO, we get all loaded and drive over to Max's where it looks nice and sunny!! Apparently though, the torrential downpour followed us right from our house to Max's and as we pulled up to the party the rain came crashing down--I mean we actually watched it intensify 10 times as we pulled the car up--WELL, it would have been challenging to get him inside IF it was inside, but this was your typical south florida kid POOL PARTY, and there was no way we could even get him unloaded at this time, let alone keep him and his stuff from getting wet--the over hang was not enough of an over hang and people were getting wet and the wind was really blowing the rain around--you could see all the people at the party huddled together underneath the over hang and the reptile show was beginning--WELL, we sat in the car and realized we didn't have enough gas to sit there and idle with bipap,etc.. running so we had to leave and go get gas and come back--we figured maybe the rain would let up by then--IN THE MEANWHILE, Payton is getting annoyed--ARE WE THERE YET?? --We get gas and go back to the party and it is now raining HARDER. After several minutes we decide to give Max his gifts and take payton toy shopping--i get outof the car, give the gifts and i really felt like such an outsider with my friends for the first time--BY THE WAY, THIS WAS NOT THEIR FAULT AT ALL--this is SMA'S FAULT.. Like normally Rob and i are good at blending in with Payton--i mean, he may not be able to do the same things as the other kids but he gets there and he has fun and he gets to see everyone and everything--this isallhe knows anyway so he is happy with that--but, if we can't get him INTO the party, well, then, he doesn't get to "PLAY." It is hard to explain how hard this hit me, but i was choked up standing there asking for someone to come say hi to him and then them not really being able to cuz the rain was REALLY coming down by now--I decided i had to go and get Payton outof there--the lightning and thunder scare him when they are close so it was time to go--i ran to the car--We got Paytons goodie bag--said bye--and left--I said ya know, everyone had to leave the party Payton cuz of the rain--i know i know--lying is bad--anyway, i started to explain to him how no one could stay and Max couldn't have a party today cuz of the rain so we would go to the mall and look for toys! Yeah, he was not happy--I turned and started to cry and told Rob it is not fair that he couldn't go to the reptile show and Rob said he would buy Payton his own reptile show & of course i started to laugh--but i decided POOL parties in south florida were probably a bad idea from now for Payton--Someone suggested not even talking about it til the day and if it doesn't rain, just go--which isn't a bad idea--but we SOO like to get him excited about stuff--like Disney etc... He actually was looking forward to that party and what a let down it must have been for him cuz he only gets to do so much ya know? ANYWAY, that was a bummer--All of my friends are SO good and always treat Payton like any other kid and their children are AWESOME with him and are so good with him. It is just really rough when we try so hard to keep him as much a part of things as possible and a thing like rain keeps us forced out. By the way, Payton went to Target and picked out a ton of toys and really had a good time in the toy section--we let him pick out whatever he wanted and he was the most vocal and picked out more than he ever has--So the day ended ok and we actually had fun with him.. i am working tonight--the brochures will be ready today (the 2nd set) so if anyone needs donation letters or brochures let me know--we have so far, 104 items on our auction that are "in." We have a ton more that is coming in or that we are working on, so if yo have anything for us to work on let me know! We are doing hotel arrangements at the Marriott in Boca this year so if anyone is interested in rates or hotel info please let me know--Roz, Holli, we are booking rooms for family and they are at a GREAT RATE this year, so give me a buzz when you get a chance!!! You are staying Fri/Sat/Sun?? I need to know everyones schedules down here--ok, i guess that is it for now--Andrea, when you are back in town, i want to get together, so let me know--i was thinking maybe Wed? Or maybe next Mon?

Name: Debbie
Email:
Date: June 08, 2004
Time: 10:33 AM

Comments

Name: Ronny DePalma
Email:
Date: June 10, 2004
Time: 01:56 PM

Comments

My heart goes out to you and your family. People take for granted everyday life. Payton is my hero, he has the will to live, and with parents and friends like you, how could he not. I have 2 boys and I am a single mom. I work at Outback #1085, I have just recently put in my notice to work a different job, less money, but hours to better suit my kids. Because my kids are ###1!!!!! I thank God everyday for what I have. God Bless you all!!!!!! Have you thought about writing to Oprah? She recently had a show (June 7) about Spiderman 2, and some kids that they considered heros. In my eyes, Payton is the biggest hero I know. Kellogs Cereal had also donated $25,000.00 to a little girls "Lemonade Stand" that she has been doing since a young age to help find a cure for her disease. Just a thought. I do not have a computer to be reached on. If I could ever help, besides the things listed that I have done, please let me know. Maria knows who I am. Sincerely, Ronny DePalma 561-966-2455

Name: Karen Chene'
Email: kacali@aol.com
Date: June 12, 2004
Time: 03:55 AM

Comments

Read Payton III I'm sooooo glad he's able to communicate better and/or easier now...I know that makes you and Rob very happy...hope Nursing hasn't been a nightmare...Pat contacted me and mentioned some..Do you remember Michelle the cordinator who moved to Mo. about 2 or 3 months ago he droped dead of a massive heart attack...he was only 36. I talked to Michelle..she spoke to him only an hour before he died...major big shock for her and hers. She's doing well. Sorry to bring up a glum subject but as they say in Peds...Doo Doo do happen Glad to hear your really doing the nursing thing..I'm doing little theater and enjoying it also doing the costumes for them now..well enough for now..Can't wait to see Payton 'the weed', since i'm sure he's grown like one.. take care c y' soon Karen ..........Big kisses and hugs to Payton XOXOXOXOXOX

Name: Talia
Email:
Date: June 13, 2004
Time: 12:45 PM

Comments

Hey, I just wanted to tell my "boyfriend" what a great time I had with him the other day! Thanx for having me over! HAHA Deb, I had a great time we need to do it again. See you at work later.

Name: Debbie
Email:
Date: June 13, 2004
Time: 09:56 PM

Comments

Hi Ronny, Karen & Talia! Ronny, did you used to work at the Coral SPrings OUtback years ago?? If so, i think we know each other! Well, I appreciate all you said--we have had a couple of friends contact the Oprah show and our story is just too sad of a story for them--if we find a cure, they will probably be interested ( or treatment) but for now it is really hard to get on television--Another friend tried dateline and another 60 minutes--it is really tough to get a sad story about babies with no happy ending on the news--Karen, I am not getting your whole email so i am going to call you this week--i am sorry that Michelle has lost someone in her family, her husband???? 36 sounds awful young to have a massive heart attack?? Unbelievable--Make sure you appreciate your time while you have it--Talia, I SO enjoyed your visit and YES, we must do it again soon! Payton absolutely loved his new clothes!! HE LOVES dressing cool! Robert has been sick all weekend and i have had to work all weekend so things have been hectic--I hope he is feeling better tomorrow/he has been really sick--Payton and i have been trying our best to STAY AWAY From him!--We have tickets printed and ready to go for the event but the invitations have had some troubles--they SHOULD be here and be mailed out THIS WEEK--I normally would have had them out by last Friday so we are a bit behind--Bear with us--If anyone knows for sure they are going and wants to just call in their orders (cc etc..) I will mail you your tickets and take payment over the phone--954-935-6025--Otherwise you should be getting your invites SOON!!!! Holli, i got your message when i got home from work but it was too late to call--call me this week when you get a chance and i will confirm everything for the hotel etc.! Just so everybody knows, we have rooms at the Marriott for $59 so if you are interested in staying let me know!! Roz, i need to talk to you too!! PS.. Payton ABSOLUTELY LOVED his new Shrek & Donkey!! THEY ARE HUGE~!! Where did you find them?? Ok, well i have a ton to do on the computer--i will write soon--

Name: Jennifer
Email: Jennifer@dtrtinsurance.com
Date: June 13, 2004
Time: 10:44 PM

Comments

Hey Debbie. This past week has been so crazy! I am sorry to hear about Payton not being able to enjoy the birthday party. That also sucks that none of the tv shows will do a story on Payton. They should spread awareness. This weekend sucked so bad. Friday, we went to my friend's wake from 2:30pm to 10:00pm and then we went to the site that he died at. Saturday was the funeral and it was so horrible. It lasted 4 hours- 4 hours or me crying, Rodd crying, family members breaking down, people almost going to the hospital, my friend (who is pregnant with the child of our friend who passed) trying to jump in the grave with him. It was so emotional. Rodd and I went and got tattoos afterwards in his memory. Mine is a heart with a cross piercing through it with his name across it and Rodd has the nail of Jeses looking as if its piercing his skin and then it says in Memory of Vic Thomas. This world is just so screwed up. Just because he was less fortunate and didn't live in a good area of town, they had no news coverage on his death. He was shot 5 times- 4 in the back and 1 in the back of the head and he still managed to get a block before collapsing. No one heard or saw anything which is just unbelievable but in that neighborhood people just don't care or are too scared to talk. The cops supposedly are investigating and have gone door to door but I dont believe it. Not one person has called in a tip. I just wants the cops to find who did this. He was such a loving person who was looking forward to being the father he never had and if the cops dont find who did this and his family does- it will be more pain because I know what they will wind up doing. His mother has to go back to the hospital tomorrow because of her heart. I am sorry to vent since I know none of you know him it just sucks that something like this happened to one of my best friends and there is no justice. He got some crappy article in the paper talking about how he was found covered in his blood. Well, I hope all is well elsewhere. I am just trying to deal with everything and stay strong for his family and girlfriend so that this baby is born and can live on his legacy. Love, Jennifer

Name: Deb
Email:
Date: June 14, 2004
Time: 02:32 PM

Comments

Hi Jenn--you can vent to me (us) anytime--this journal is for all of our family and friends and anyone who cares about sma and our children and if they come to this site and read--they know they are welcome to vent too.. --I am all about "doing the right thing" and JUSTICE in the world and as i have grown up, the one thing that disappoints me the most is how much INjustice goes on in the world--You can bet your buns that if a 19 year old in Parkland was gunned down at 10pm while he walked down the street in his neighborhood to meet his pregnant girlfriend--it would be ALL OVER THE NEWS. This poor kid was not involved in drugs and unfortunately due to poverty and circumstances found himself living in a neighborhood that was known for violence, crime, etc.. He was working hard to provide a real future for his child and his soon to be wife. I know that violence and just plain tragedy happens all the time but WHY would the media just ignore this kids' death because he lived in a "BAD" neighborhood?? NOT FAIR I say, and it is just the latest on a VERY LONG LIST---PlEASE feel free to vent here anytime guys--life is really great sometimes but sometimes we deal with things that are ANYTHING but great--

Name: shaina
Email: shaina@ourshootingstar.com
Date: June 15, 2004
Time: 10:50 PM

Comments

hi guys- we are heading to the fsma conference on thursday. we will be thinking of payton and you while we are there. debbie- i told you i'd get you that video for the benefit. i got the one from last year, but i heard that there is a new one for this year- so we will see it on sunday. i will speak to her about customizing it for payton's pals. my friends are all asking about the benefit- and can't wait to come again this year. i'll call you when we get back so that me and max can make a time to come visit payton!!!!!!!!!!!! love love love, shaina

Name: Debbie
Email:
Date: June 16, 2004
Time: 11:20 PM

Comments

TESTING..

Name: Debbie
Email:
Date: June 16, 2004
Time: 11:33 PM

Comments

Hi Shaina!! I have tried to write to you on here a couple of times & have had no luck!! I hope you guys have a great trip!! & if you could get that video for me i would be THRILLED!! THANK YOU!!! You and Max have to schedule a visit when you get back--I have been super busy with benefit stuff, etc.. but would love to have you guys come and see Payton!! & we would love to see the baby! I am SO glad that people are excited about this years' benefit!! The auction this year is going to be our most organized and biggest yet!! I had a bit of a bummer situation today--turns out that the girl that ran the puppy store that we have worked with for three years, is no longer running that store--:( New owners or managers told me that they were not interested in helping--I would not suggest spending any more of your hard earned money at the PUPPY CONNECTION.. The lovely people that have helped us so much for our last three fundraisers are no longer involved with that store and if i could play you back a clip of the "nice" new lady telling me how they let the old girl go because of "things like this" (yes, she was talking about how Donna helped with my babys charity) ANYWAY, whatever, there are tons of pet stores and dogs being born out there--so CALLING ALL PET LOVERS/OWNERS ETC>> If anyone knows anyone that would maybe donate a pup to the LIVE AUCTION This year, please let me know--The puppy is always such a highlight of the evening--i will research long and hard to make this happen, so if anyone has any tips it would be hugely appreciated!!! THANKS GUYS!!!!!!!!!!!!!!!! LOVE DEB:) PS>>Robert is still sick and Payton was under the weather today--seems that some of our friends are sick too--something is obviously going around so start taking your ECHINACEA!!!! Payton seemed to feel better this evening--but Rob still was *YUCK* Night everyone!

Name: Debbie
Email:
Date: June 17, 2004
Time: 10:19 AM

Comments

Name: Debbie
Email:
Date: June 17, 2004
Time: 10:19 AM

Comments

Name: Lisa
Email: lisa_mattiocco
Date: June 17, 2004
Time: 11:41 AM

Comments

Hi Deb, Rob and Payton, I hope Robert and Payton are feeling better :(. Just read your entry about the Puppy Connection - what a bummer! Maybe you can contact a few local breeders? Email them a link to Payton's Pal's or call them? Let me know, I could probably help out if its done online (by email). Did the puppies in the past come with papers? If not, there is always rescue pups that desperately need homes. They do get pure breeds on occassion definitely Am Staff's and pit bull pups. Unfortunately the shelters are packed with them (one of my favorite breeds). Have you thought about a kitten? They are very cute and cuddly too (don't ask for Rob's opinion on that one - I think he is allergic and he never really liked my cats growing up ;)). Anyways just a few thoughts... Give Payton a BIG HUG & KISS!! Take Care, Lisa

Name: Talia
Email:
Date: June 18, 2004
Time: 01:50 PM

Comments

Hey Deb, I just wanted to tell you how much I liked helping you and how much I love chatting with you and helping with the benifit. I hope you had fun too, and oh I AM SOO EXCITED ABOUT PAYTON SHAKEING HIS HEAD YES! it was very exciting. I'll see you at work. ttyl byebye

Name: CAROLE
Email: XXOOXXO@AOL.COM
Date: June 20, 2004
Time: 10:10 AM

Comments

THE HOTEL INFO FOR THE BENEFIT. THE MARRIOT COURTYARD AT 95 AND GLADES ROAD. NORTH WEST CORNER. IT'S ONLY 3 MILES FROM THE HALL. PLEASE RESERVE ASAP.THE EVENT IS JULY 24 PLEASE CALL 561-241-7070 LET THEM KNOW YOU ARE WITH THE PAYTON'S PALS FOR A RATE OF $59 PER NIGHT.

Name: shaina
Email: shaina@ourshotingstar.com
Date: June 20, 2004
Time: 08:54 PM

Comments

hi guys- first- rob happy father's day! payton is so lucky to have a great, GIVING dad like you! we just got back to from the conference, and our friend from kansas city told us you were helping them out. you are too amazing! i am going to start working on you guys NOW to bring payton to next year's conference. he would LOVE to see ALL the other type ones just like him (well.. maybe not as CUTE- but of course, we are biased). i think that next year is supposed to be on the east coast, so maybe you could make a big road trip out of it? we were thinking of you all, of course. i spoke to anne meguiar (swanson's granma). she said no problem about customizing the video for payton's pals. we just have to email her pics of payton (and if you want any other adorable local kids : - ) pics on there, and she will put it together. i will call you this wek to get everything in place- but you can definately count on it! and yes- me and max NEED to come visit. love, shaina, adi, jordan, jacob (in spirit) and max

Name: Deb!
Email:
Date: June 21, 2004
Time: 12:48 AM

Comments

Wow--lots going on! Hi Lisa!! If you have any tips about a dog, let me know--i have a couple people working on it and we really really want a dog again, so if you can think of anything or anyone that could help, just hollar and i will get to work on it!! Also, i am going to call you this week about all the Case Soft stuff--i am totally clueless about all that so i need to talk--Carole, thanks for posting the hotel info--this is a FABULOUS RATE!!! So much better than we had thought it was going to be--if anyone needs to make reservations just remember to say you are with Paytons Pals for the $59 rate!! Shaina, you have to give me a buzz whenever you get time--i'd love to chat and i am THRILLED that the video is going to work out!! We have to put together pics of all the kids we know and send them--that would be amazing!! I have been slammed with things to do for the benefit but things are coming along--the invites were a big job this weekend and i must say THANKYOU so much to my good friend Talia for all the sticking, stamping, stuffing, label making that you did this weekend!! WHAT A BIG HELP!! That label nightmare was no fun, but i think labels will be much easier as time goes on--esp. now that i have my MASTER COPY!!:) SOOO, INVITES ARE OUT!! EVERYONE should be getting theirs sometime next week so PLEASE let me know if you do not get one for some reason! We are getting more and more organized as the years go by, but we are all volunteer and working our buns off and sometimes mistakes are made--please be patient with us and we will get it right!! Also, please let me know if names are not spelled right or addresses are slightly off or whatever you may notice that is incorrect!! THANKS EVERYBODY!!! I would like to say THANKYOU TO EVERYBODY That has gone out and helped so far to get donations for the silent auction!! We have gone out and two separate days and actually have done quite well!! Kim, Carole, Talia, Alexis, Jen, Tori, Meghan, Marni, Lori, You guys are all so amazing--you really don't even know how great you are--and all of you that have gone out on your own asking for help in the community, talking to neighbors, friends, family, bosses, peers--you guys are amazing too--we WILL FIND A TREATMENT FOR THIS DISEASE--cuz of people like you that never give up!! You are all the best!! Love love love & more love to all of our great friends and wonderful family--

Name: Deb!
Email:
Date: June 21, 2004
Time: 12:48 AM

Comments

Name: Debbie
Email:
Date: June 22, 2004
Time: 10:43 AM

Comments

OK, the LAST of the invites have gone out TODAY--there were about 150 that went out this afternoon but most of them went out on Saturday--IF you do not receive one by the end of the week, please let me know!! I want to remind everyone that the Marriott on Glades and 95 (northwest corner) is the hotel we are using for the event--there are rooms there for $59 per night if you say you are with Paytons Pals on Friday June 23rd and Saturday June 24th--most people are staying on the 24th but we have family etc.. that are staying Fri/Sat... The phone number there for reservations is 561-241-7070---Let me know if you have any problems with this etc.. We have alot we are working on up til the event but we are SUPER EXCITED and look forward to seeing everyone!! If you have any auction items try to get them to me as soon as possible as we are starting to put the auction booklet together now-- Love to you all!!

Name: Debbie Freeman
Email:
Date: June 23, 2004
Time: 05:03 PM

Comments

I just want to send out sympathies and condolences to the entire community that supported Mattie from MDA--he was 13 years old and suffering from a rare form of muscular dystrophy called dysautonomic mitochondrial myopathy--he was superstar kid that wrote books, poetry and spread a message about life and love that was amazing--his 3 older siblings all died from this same disease and his mother suffers from the adult onset form of it--Mattie passed away yesterday due to complications from his ridiculous disease and the we are so heartbroken that he has passed.... Mattie, the world will miss you & the joy you shared--

Name: Jennifer
Email: jpnlg@bellsouth.net
Date: June 24, 2004
Time: 12:37 PM

Comments

Hey Debbie. I am so sorry to hear about Mattie. I tried giving you a call last night but couldn't get a hold of you. I just wanted to let you know I got my room reserved at the hotel for the night of the benefit. Also, I wanted to let you know that we ended up giving that furniture we had to our friends who moved into a new place. Also, we got the invitation for the benefit and I wanted to know if we have to send the $ with the RSVP or if we can pay a little closer to the event. The reason I ask if because my friend Christine that you spoke with before- her and her husband definitely want to go along with a friend of theirs that will be in town that weekend but they just moved into their new apt so they need a couple of weeks to gather the money up. So please let me know. I also wanted to speak with you on something else, but nothing major- so call me when you have a free minute at my work- 954-772-8232 ext 305. Love, Jennifer

Name: Debbie
Email:
Date: June 24, 2004
Time: 06:29 PM

Comments

Hi Jenn! I will definitely give you a buzz at work tomorrow--Absolutely you can pay later--actually payment of tickets is fine up til the day of the event or even AT the event--The July 2nd response request is really more for auction booklet messages and ads to meet deadlines for printing, etc.. But the ticket donation is good all the way up to the very day of the event--We will chat tomorrow--THings have started to get super super hectic for me as far as organizing and getting ready for the 24th--i usually start to get chest pains about 2 months prior to the event and they really just started for me this year today, so i think i am doing better each year but it can get overwhelming no matter what--I am looking forward to getting the bigger details confirmed and settle so that we can work mainly on registration and the auction/auction booklet--ALL of the invites are out so let me know if you still have not received one--Payton is doing awesome--We just saw the major breakthrough in muscular development for genetic disorders in Germany on CNBC--if any of you saw that you must have freaked--it was pretty amazing and YES, it is the kind of thing that would make it so that a kid like Payton can live longer--change their quality of life & Maybe even CURE Diseases--IT will take time to get these things really rolling for our kids but they have admitted that this is BIG!! KEEP YOUR FINGERS CROSSED!!!!!!!!!!!!!!!!! Love, Deb

Name: Debbie
Email:
Date: June 27, 2004
Time: 06:13 PM

Comments

HELLO OUT THERE--WE had a wonderful day at the christening for little Kylie Anthony! SHE was so adorable and good!! She didn't cry one time during the entire ceremony--Congratulations Michele and Jason!! WE took Payton to TOYS R US--his total favorite and he picked out MANY toys that he wanted--He is a VERY BIG fan of Toys R US--:) We are keeping busy and working hard on event details--Payton is doing great & talking up a storm--lots going on this week--hope everybody is doing well--LOVE! Deb

Name: Debbie
Email:
Date: June 30, 2004
Time: 11:14 PM

Comments

CONGRATULATIONS TAMARA & RAFE ON YOUR NEW BABY!! Jordan Reese was born last night TWO MONTHS early and she is in the NICU at just over 4 pounds/16 3/4 inches long but she is doing great and the docs say she is strong and breathing all on her own just fine--she is just tiny!! Tamara, i hope she is home with you ASAP!!!!! We love you and i am coming to visit as soon as we are "allowed!" LOVE YOU GUYS!

Name: Debbie
Email:
Date: July 04, 2004
Time: 08:23 PM

Comments

Happy July 4th everybody and HAPPY BIRTHDAY RYAN!!!Hope you have a Blast today and celebrate with some great fireworks!! We are looking forward to seeing you guys next weekend!! Love-Deb

Name: Tori
Email: SoCcErQtPy2@aol.com
Date: July 06, 2004
Time: 10:42 PM

Comments

Hello Debbie, Rob, and Payton and my fellow Coral Springs Outbackers, Just wanted to give a huge GATOR shoutout to everyone miss you guys so much. Debbie I think of you everyday and you and your family are always in my thoughts. If me or my dad can do anything else please please please let us know... you know where to reach me... Can't wait to see you all when I come home. Miss you ALL...And I miss getting donations with my favorite people!! Time to finish my first college paper but just wanted to say hello san say that I'm thinking of you always!! GO GATORS!!! XOXOXO TORI

Name: Debbie
Email:
Date: July 07, 2004
Time: 10:15 PM

Comments

HAPPY 10TH BIRTHDAY ASHLEY!!!!!! PAYTON CAN'T WAIT TO SEE YOU! & Neither can we!! We love you and we hope you had a great day and enjoyed all your presents too!!

Name: Debbie
Email:
Date: July 09, 2004
Time: 09:38 PM

Comments

HI OUT THERE!! I must apologize for not writing as much as i usually do--things have just been so hectic--esp. this week--Payton is turning 4!! We are having a big party for him and all his friends-HE IS SOO EXCITED!!!-details for the event are coming along and it is getting close!! I am SO excited about this year and with each year we seem to get stronger, more organized, more comfortable with running an event like this and of this size--it is hard to manage but we all do our best and we are all getting better and better at it--I can't wait to see everyone this year and I hope we raise a ton of research money!!!! THEY ARE SOOOO CLOSE to a TREATMENT FOR SMA---this is part of what keeps us going as a family as i am sure most of you could imagine--keep your fingers crossed!! Have a great weekend everyone and i will keep you posted as to how things are going!!

Name: Debbie
Email:
Date: July 11, 2004
Time: 01:31 AM

Comments

HELLO OUT THERE!!! I just wanted to let everyone know that Payton had a BLAST at his party today--he LOVED the Shrek 2 movie--thank goodness and LOVED seeing all the kids and having them all say happy birthday to him, etc.. Payton loves seeing other kids and having lots going on around him and there is nothing better to him than his bday party!! It was SUCH a great day!! His actual birthday is next Wednesday and we will have a family party then, but i don't think it will top his movie party with friends! He got A TON of great gifts and we are so thankful to have such great friends and so many little ones that are so great with Payton! ALL The kids are soooo good and they all treat him so nice and all say happy birthday Payton, etc..this was a great day for all of us!! We are looking forward to seeing everybody in two weeks!!! have a great weekend!!

Name: Amy
Email: amy@amyletter.com
Date: July 11, 2004
Time: 03:25 PM

Comments

Thinking of you... with love... Amy

Name: Tracy and Sky (SMA1 4yo)
Email: ourlilsky@aol.com
Date: July 13, 2004
Time: 01:46 PM

Comments

PAYTON!!!! I KNOW IT IS A DAY EARLY BUT HAPPY BIRTHDAY!! WE HOPE YOU HAVE A GREAT DAY. SKY SAYS IT IS SO COOL BEING 4 AND SHE IS SO GLAD YOU TO ARE SO CLOSE IN AGE. LOTS AND LOTS OF HUGS AND KISSES SENT YOU WAY ON THIS VERY SPECIAL DAY!!

Name: Tracy and Sky (SMA1 4yo)
Email: ourlilsky@aol.com
Date: July 13, 2004
Time: 01:47 PM

Comments

Name: g-ma roz and bill
Email:
Date: July 14, 2004
Time: 07:46 AM

Comments

HAPPY BIRTHDAY PAYTON........YOU ARE A VERY BIG BOY NOW 4 YEARS OLD! WOW! I HOPE YOUR DAY IS WONDERFUL AND WE WILL SEE YOU SOON...........KISSES AND BIG HUGS............lOVE YOU!

Name: shaina
Email: shaina@ourshootingstar.com
Date: July 14, 2004
Time: 08:44 AM

Comments

dear payton- happy happy happy birthday. wow! you are so amazing and we are so happy to be part of your life. you have touched us with your amazing spirit and courage. we love you and hope that you have the best birthday - big boy!!!!!!!!! to debbie and rob- today really is a testament to the love and dedication you have for payton. you are two of the most incredible people we have ever met. thank you for all your kindness and honesty over the years and thank you for all you do in our fight against sma. give your big four year old a kiss from us today!!!!!! we love you guys! love, shaina, adi, jordan , max & jacob (in spirit)

Name: JEN B
Email:
Date: July 14, 2004
Time: 12:07 PM

Comments

HAPPY BITRTHDAY PAYTON!!!! I CANT BELIEVE THAT YOU ARE ALREADY FOUR!!!!! YOU ARE SUCH A BIG BOY. LOVE YOU LOTS JEN XOXOXO

Name: Ryan, Jamie & Reese
Email: RyJam282@bellsouth.net
Date: July 14, 2004
Time: 12:09 PM

Comments

Payton, We just wanted to wish you a very Happy Birthday. We had a wonderful time at your party and can't wait to see you again. What a big boy you are! We love you very much and are so proud of everything you do. We hope you have a wonderful day today because it's your special day!!! Enjoy! Love, Uncle Ryan, Aunt Jamie & Cousin Reese.

Name: Talia
Email: ltjgal555@hotmail.com
Date: July 14, 2004
Time: 12:21 PM

Comments

Hey big boy! Happy Birthday! I can't believe your four! Have a GREAT day, and my ALL your wishes come true, you truely deserve it. I LOVE YOU SOO MUCH! I never thought such a little boy could change my life but you have, Happy Birthday and many more to come!!!

Name: mommy
Email:
Date: July 14, 2004
Time: 05:34 PM

Comments

HAPPY BIRTHDAY TO PAYTON!! WOW!! What a fabulous day it is--Payton is here, he is happy and healthy and as much as sma has ruled his/our life/lives for four years, Payton is STILL FIGHTING--i knew we'd have a tough little kid--we are celebrating so i must go but i wanted to say thankyou to everyone that has wished Payton a HAPPY BIRTHDAY!! You are all part of how he has made it to this point!! Love!

Name: Miracle for Madison & Friends
Email: miracleformadison1@mac.com
Date: July 14, 2004
Time: 05:56 PM

Comments

WE JUST WANTED TO SAY -- HAPPY 4TH BIRTHDAY TO A WONDERFUL BOY. WE HOPE YOU ARE HAVING A GREAT TIME. AND MADISON SAYS - YOU CAN TASTE THE FROSTING ON YOUR CAKE - IF YOU WANT.!!!!!!! HAPPY BIRTHDAY PAYTON - YOU ARE AN INSPIRATION.

Name: Jennifer
Email:
Date: July 14, 2004
Time: 08:59 PM

Comments

Happy 4th Birthday Payton! Glad to hear you had a great party with your friends! Looking forward to seeing you soon! Lots of love always...

Name: Debbie
Email:
Date: July 19, 2004
Time: 11:15 AM

Comments

Hello out there!! Well, we have been SUPER busy and things are hectic but all is going ok so far--we are REALLY EXCITED for this weekend!! Channel 10 has decided to do a story on Payton and UM/SMA etc, this week and we are being interviewed tomorrow--WISH US LUCK!! We should be on the 500 news or 530 news either tomorrow or one day this week--i will let you all know! I want to thank AMBER STATLER of Channel 10 for supporting our efforts, and helping to spread the word about sma so that we can get closer to the treatment/cure for this disease!! This is the KEY to funding the CURE! If anyone has any questions, feel free to call me at 954-935-6025 and if anyone needs info about the "Say G'day to Cure SMA" event on Saturday please call the same number! We are so looking forward to seeing everyone--We had a contest this year for a new logo at the fort lauderdale institute and Daniel Maxwell won--he did a fantastic logo that Rob just finished and it came out great!! We did sweats, tshirts, tanks, and bags this year--ok i will be back-Payton is doing great and he is excited too!

Name: Jennifer
Email: Jennifer@dtrtinsurance.com
Date: July 19, 2004
Time: 09:55 PM

Comments

Hey Debbie. I look forward to seeing you this weekend. Rodd and I will be there at some point. Can u please post up the entire address so I can get directions off of Mapquest to the benefit because I have no idea where the place is. Sorry so short but I got to get some sleep. This week is gonna kill me. Love, Jennifer

Name: Deb
Email:
Date: July 19, 2004
Time: 11:01 PM

Comments

HI JENN!! YES, YES, the address is the Wayne Barton Study Center at 269 N.E. 14th Street, Boca Raton--call me at 954-935-6025 if anyone needs specific directions--Kelly will be calling all the volunteers this week to make sure they know where to go and when, so just everyone knows--Channel 10 is coming tomorrow at 10am--:) Hopefully we will be on the news this week before the benefit!! WIsh us LUCK!! Take care everyone!

Name: Debbie Freeman
Email:
Date: July 20, 2004
Time: 11:40 AM

Comments

HI OUT THERE!! Well, our interview this morning was great! Payton was a little groggy because he had just woken up but he was talking and the interview went very well--they got footage of us with Payton and on our website, etc... Channel 10 has been great to us/Payton/the fight for a cure for SMA--so choose 10 FOR YOUR NEWS!!:) We are airing on thursday at 5:30 pm on channel 10 so be sure to watch!!! THANKYOU EVERYONE FOR ALL YOUR SUPPORT!!!

Name: CAROLE
Email: XXOOXXO@AOL.COM
Date: July 21, 2004
Time: 10:49 AM

Comments

WE HAVE A BLOCK OF ROOMS AVAILABLE AT THE COURTYARD MARRIOT 561-241-7070 GLADES ROAD AND 95

Name: Christine
Email: Christine@DTRTinsurance.com
Date: July 21, 2004
Time: 02:37 PM

Comments

Debbie, Payton, and the rest of the crew, Hi! Hi! Hi! First off, let me say thank you for inviting us to Payton's birthday party, Shrek 2 was a blast!!! Casey and I had a lot of fun with everyone, and it was great to see Payton again. As far as this weekend, Casey and I are so looking forward to going out there. We don't have a lot of money, but we're going to try to get together whatever we have and donate it towards MSA and the benefit. We're really excited and looking forward to going!!! See you Saturday!!!

Name: michelle
Email: miracle for madison & friends
Date: July 23, 2004
Time: 09:58 PM

Comments

Debbie, Payton and Rob - wish we could be there with you Saturday. You guys are really amazing and we all love you for it. So have fun, eat hardy (yum - I love Outback) and raise a lot of money. Madison says to tell everyone to BID HIGH BID HIGH FOR PAYTON AND HIS PALS.

Name: Randy and Cheryl Ricker
Email: Sourand88@aol.com
Date: July 24, 2004
Time: 09:49 AM

Comments

With all our love always!

Name: Reese Withey
Email: RyJam282@bellsouth.net
Date: July 25, 2004
Time: 11:09 AM

Comments

Uncle Rob, Aunt Debbie & Cousin Payton, I just wanted to tell you that I had a great time last night. I had fun running around while Daddy chased me. I thought you looked so handsome in your outfit Cousin Payton. I hope we raised alot of money!! I love you and can't wait to see you again. Hugs & Kisses Cousin Reese

Name: jax
Email: prncss0413@aol.com
Date: July 25, 2004
Time: 03:24 PM

Comments

hey guys, just wanted to let you know how much fun i had last night. everything was perfect including all the fundraising!!! can't wait to hear the final total. payton, you looked handsome...LIKE ALWAYS, but i need to know, who is this girlfriend of yours that drew you a picture =). well thanks again for having me and letting me take part in the event and in the fight to cure sma. love you xoxoxxo

Name: Jennifer
Email: Jennifer@dtrtinsurance.com
Date: July 26, 2004
Time: 10:27 AM

Comments

Hey Debbie. I just wanted to say hello and how handsome Payton looked on Saturday in his polo outfit. I cannot wait to hear what the grand total is. I think it will better than ever which is awesome! I am sooo sorry that we got there so late. We will definitely be there next year start to finish. Me and Rodd will be back in our spot. The event was very nice. I will talk to you soon.

Name: Talia
Email: ltjgal555@hotmail.com
Date: July 26, 2004
Time: 12:19 PM

Comments

Hey! I just wanted to thank you for letting me be apart of something so amazing, I thought saturday went very very well and its something I am so very proud to be a part of. I had a TON of fun and I know everyone else did too! Payton looked SOO cute like always and I can't wait till next year for it to be even more sucessful! I LOVE YOU ALL VERY MUCH! You are the most amazing family I know!

Name: Dionne Ryff
Email: dryff@alliedadvpub.com
Date: July 26, 2004
Time: 04:15 PM

Comments

Hi all! Debbie's DSL is down so she asked me to post the following exciting information...this year's benefit raised a whopping...$78,500!!!! Totally AMAZING!!! In just our 4th year, we have raised over $228,000!!!! Our new venue at the Wayne Barton Study Center worked out very well! Lots of space for everyone!!! 97.3 Coast came out to support the event again this year, and Coast Morning Show DJ Julie Guy was the evening's host! Matthew Green had the crowd so into the Live auction this year - it was super amazing and EXCITING -- especially the MTV Music Video tickets which sold for an unprecedented $10,000!!!! (Thank you EJ Lavin!!!!) Our newly designed t-shirts flew off the shelves (so to speak) - thank you Daniel Maxwell!!! Thank you so much to everyone who attended, everyone who volunteered their time, Outback Steakhouse, 97.3 Coast FM and Debbie & Rob for putting together such a fun and worthy evening!! Debbie says to keep an eye out for this Wednesday's Boca Raton News as they will have coverage of the event and Sun-Sentinel will possibly be doing a follow up story as well. Debbie promises to be back up on line ASAP!!!! We hope everyone had a blast and we can't wait to see you all next year...and then some!!!

Name: Michele Anthony
Email: MAnthony@myacc.net
Date: July 26, 2004
Time: 08:18 PM

Comments

This was my first time at this event and I thought it was FANTASTIC!!! I had a wonderful time. I would love to help out in anyway I can. So please let me know if you need volunteers.... Debbie and Rob you are wonderful amazing people to fight to find a cure.... With Love, Michele

Name:
Email:
Date: July 26, 2004
Time: 11:15 PM

Comments

Payton is my hero! That is so awesome that you raised so much money at the fundraiser. Wish that we could do more to help you guys. Love, Love, Love to Payton, Rob and Deb.

Name: Chris Colby
Email: Christine@DTRTinsurance.com
Date: July 27, 2004
Time: 10:55 AM

Comments

Hi Debbie, Rob, and Payton!!! I'm so happy for you all that the benefit ws such a hug success!!! Casey and I had a wonderful time at our first Payton's Pals benefit and we are already looking forward to helping out next year. We won't be quite so swamped with moving at the same time, so sign us up!!! I can't believe how much money was raised...it's so inspiring to see how giving people can be to things like this that really, really matter. Let me know if I can do ANYTHING to help out!!! Jenn's got my number! Take care, and hugs to you all!!!

Name: shaina
Email: shaina@ourshootingstar.com
Date: July 27, 2004
Time: 11:35 AM

Comments

hi debbie, rob & payton, congratulations on such a successful event!!!!!!!!! WOW!!!!!!!! all of our family & friends had such a nice time. we can not thank you enough for honoring our son. it means so much to us that jacob is included. we know he was with us in spirit saturday night, and that he is always watching over payton. we are so proud of all of you and hope that we can all get together soon when we are all not so crazy. love, shaina, adi, jordan, max & angel jacob.

Name: Dionne Ryff
Email: dryff@alliedadvpub.com
Date: July 27, 2004
Time: 01:44 PM

Comments

**Update**Update**Update**Update** -- I was just speaking with Debbie who tells me that she just found another credit card slip which brings our total from this year's event to...$79,750!!! (Just $250 short of $80,000!!!) We are now at $20,000 over last year's event!!!! So let's get ready to "Say G'Day To Fight SMA" for 2005!!!! Hopefully next year's event will break the $100,000 mark!!!!

Name: Tori
Email: SoCcErQtPy2@aol.com
Date: July 27, 2004
Time: 02:55 PM

Comments

Dear Debbie, Rob, and Most adorable Payton, I just wanted to say how unbelieveable the Benefit was this weekend!! I am soo honored to have been a part of it, muchless the chance to know such extraordinary people like yourselves. You all deserve a round of applause! I am soo grateful for have driven down to be a part of this phenomenol event and can not believe how awesome we did!! One huge step closer..... I miss you all sooo much! Its not the same here without you in the Swamp! Best Wishes and My love always!! I can't wait for next year.... Tori

Name: Alice Shayna Letter
Email: ShaynaLetter@yahoo.com
Date: July 27, 2004
Time: 03:09 PM

Comments

Dear Debbie, YOU are FABULOUS! I am so proud of you, Rob and especially PAYTON. Mazel Tov on your fundraiser Saturday night! I love you so much and you are so right about your MOM. She is awesome. I have known her since I was 10 years old. Today is Tisha B'Av, a day of mourning...a good day for tears, it is most appropriate to cry and feel sad. I have visited every page of your website, reading the messages and getting to know you, a lot better. I just about finished the box of tissues on my desk, so I thought now might be a good time to write you. You, Rob and Payton are turning lemons into lemonade. I have never felt a deeper sense of love for you Deb, as I do right now. YOU are making a difference and you are motivated by LOVE. I love you Debbie - Aunt Alice (aka SHAYNA) XXOO

Name: Debbie
Email:
Date: July 28, 2004
Time: 11:56 PM

Comments

WOW--is pretty much all i can say!! We are now at over $80,000 with the donations that Rob has collected from work and the donations that have come in the mail from some that could not attend this years event--EIGHTY THOUSAND DOLLARS!! WHO would have ever guessed!!?? I am so happy and so proud and SO excited! We are TRULY MAKING A DIFFERENCE!! The excitement at this years event was incredible and this years LIVE AUCTION Was by far, the highlight of the night!! Many of us are STILL talking about it!! Matthew Green, WHOM WE CANNOT THANK ENOUGH!, is the most amazing auctioneer ever and he is SO Great with the crowd and so professional and just so there to help us raise a ton of money to help find a CURE!! This year he is responsible for our Live Auction which raised THIRTY THOUSAND DOLLARS ALONE!! You really had to be there to understand what happened with those MTV tickets but i am going to attempt to explain--FIRST OF ALL, our most talented, incredible "auction Item getter," MRS. Dionne Ryff, was able to attain TWO TICKETS to this years VMA'S, better known as the MTV VIDEO MUSIC AWARDS--this would be the place to see MUSIC celebrities GALORE and in the FLESH!! I don't even think you can normally get these tickets and from what i understand, they would have a value of at least a thousand a piece IF they were for sale--ANYWAY, the VMA's are in MIami this year at the AMerican Airlines Arena For the FIRST TIME EVER IN MIAMI!! & we figured ok, AWESOME --they'll probably get a few thousand--THIS WILL BE BIG!! Well, WHO KNEW that Trish and E.J. were coming to the event with their hearts set on these tickets!! After the bidding got up to about 3 or 4 thousand people started to notice that the bidding narrowed down to two bidders--Trish up front and E.J. at the table just behind her--someone came to me and said you MUST come see what is happening over here--At this point the bidding is around 5 thousand--I must have been open mouthed for the next 15-20 minutes--they went in two and one hundred dollar increments all the way up to TEN THOUSAND DOLLARS!! NO, I AM NOT JOKING!! It was the most exciting thing i have ever seen in my life! It felt like a scene out of a movie--REally. WIth each bid, the crowd was on pins and needles waiting to see if the other would bid again & when they would, the crowd just went WILD.. FInally, at 10 thousand, E.J. just threw his hands up instead of his booklet to motion with all ten fingers and you could probably hear the crowd all through Boca Raton--it was CRAZY!!! It was a really great night, the food was awesome--we did just filets this year but next year we are doing chicken/filet for each person--too many of us non red meat eaters out there---The silent auction room was awesome, TOTALLY ORGANIZED, (Adi said it felt like fort knox in there!) and with a little tweaking, that room is GOING to be fort knox next year! We had 1 police officer this year and next we will probably have two--We have a ton of fun with the raffle every year, but people want to do it last instead of in the middle of the evening--SOOO, that is what we are going to do--from now on, you can buy raffle tickets ALL NIGHT LONG & we will do a HUGE raffle calling AFTER the LIVE AUCTION--this should alleviate any competition between the Silent Auction and the raffle--Every body looked so nice and Payton was just a cutie pie-he lOVES parties and he knew this was a party for him! His numbers were fabulous and he stayed awake the WHOLE time--what a social butterfly just like whom i wonder??:) -we took pics for the Sun-Sentinel and they had a two page article in todays West Boca Times (an insert in the Palm Beach County edition of the sun-sentinel) I will try to post it on the website as soon as possible!! Things seem to get better and more organized each year, but this would not be happening if it were not for the dedication of some KEY players--i am talking about people who have volunteered thousands of hours of effort, time and energy into this cause... SOME OF THE PEOPLE THAT HAVE DEDICATED THEMSELVES TO THE SEARCH FOR A CURE & WERE KEYS TO MAKING THIS YEAR A SUCCESS ARE.. ALL OF THE LEADERSHIP STUDENTS AT STONEMAN DOUGLAS THAT CAME & Set up tables, centerpieces, linen, etc.. YOU GUYS ROCK!! My mom, Robert, Kelly Ernst, Lori Mawhinney, Talia Solomon, Jen Berman, Dionne Ryff, Maria Giles, Carole Hall, Kim Brown, Megan Vesey, Andrea & Morrie Frydman, Matthew Green, Casey Rockerman, Kelly (JVP ASST), Tamara Padgett, Jackie Mailhe, Tim Martin, Lori Ball, Holli Freeman & Troy Adams, Jill Lustig, Becky Welner, ALexis, Jamie Joy Trippedo, Lauren Ackerman, Jason, Gary Kaplan, Andee Powell, Jason Wechter, John Nelson, Tori Rodgers, Amanda Cooney, Deanna Perlin, Bill & Danielle Malick, Marni Weinberg, ALL OF THE VOLUNTEERS FROM Coral SPrings, 17th Street, 62nd Street, Davie, Pembroke Pines & Plantation OUTBACK-THANK YOU ALL FOR VOLUNTEERING YOUR TIME TO HELP US PUT THIS EVENT TOGETHER & FOR VOLUNTEERING YOUR TIME AT THE EVENT!!-I found out that there were several volunteers from other Outbacks that wanted to volunteer but we just didn't have the room--TURNING AWAY VOLUNTEERS?? Only at Outback would you find the kind of support where you would have TOO Many volunteers!! Most people have never heard of such a thing! I am telling you--this is one of the most amazing companies, filled with the greatest people--you have ever seen! I also could NEVER get anything done without all of the great people that donate every year to our benefit!! OUTBACK STEAKHOUSE, Yovino Printing, National, Premier & Southern, Coca Cola, Budweiser, Gosselin Graphics, South Florida Striptees, Matthew Green Jewelers, Paramount, Allied, HOnestly there are THOUSANDS OF COMPANIES that donate to our auctions and help us to put this thing together!! ANother highlight of the night was the PENNIES FOR PAYTON check presentation--apparently our little friend Robin Siegel has been out collecting "pennies for Payton" at local businesses, etc.. and collected OVER FOUR HUNDRED dollars in donations for PAYTONS FIGHT!! SHe is one amazing little girl and we LOVE HER SO MUCH!! I COULD NEVER THANK EVERY BODY ENOUGH, but i hope everyone knows that with all my heart, I really do appreciate everyones' individual doings, and individual efforts, and individual commitment to stopping this disease from taking any more innocent lives--TOGETHER we are finding a CURE! I LOVE LOVE LOVE love you all--be back soon! PS>> With all of our fundraising efforts(events, car washes, garage sales, baked goods, etc..) since our first event in June of 2001--which was just over three years ago--we have raised over $240,000!! We have busted our butts to keep our expenses LOW and have really made a dent in the fight against sma!! THANKS AGAIN EVERYONE!!

Name: Debbie
Email:
Date: July 29, 2004
Time: 12:01 AM

Comments

OMG!! I almost forgot the entire TEAM IN THE SILENT AUCTION ROOM!! YOU MUST UNDERSTAND, this took weeks of preparation (fort knox didn't happen over night!) and a special thanks goes out to! Renee Delgado, Andy Ryff, Larry, Kari, Ivan, Amanda, Kent & Eileen Lerner, Joe, DIONNE, Katie, and everyone of the masterminds that made that room work as smoothly as it did!! IT WAS AMAZING! THANKS GUYS!!! Hopefully next year you can take shifts to come out and see some of the excitement in the dining area!! ESP. the LIVE Auction!! PSS.. ALSO, i do not want to forget Walking, who made some fantastic logos for future events for us, and DANIEL MAXWELL, who was our winner and designer of our newest and coolest logo "SAY G'DAY TO CURE SMA SHIRT!" Ok, We love you guys--GOODNIGHT!!

Name: Debbie
Email:
Date: August 01, 2004
Time: 05:55 PM

Comments

Hello Hello Hello!!I am (knock on wood) FINALLY BACK ONLINE!!! WEll, it has not been a fun few days for us--Payton is sick, ROb is sick and yes, even mommy is sick--I NEVER get sick so this has hit us really hard--i don't think the boys like to function without me!:) YEsterday i could not even move from the soreness and ache--i guess we all got a version of the flu because of our symptoms--i can't even say how worried we have been about Payton but he seems to be doing better today--he has been dealing with this for about 4 days along with Rob--Keep your fingers crossed for him to be feeling great within the next couple of days!! HAPPY BIRTHDAY TO HAYDEN MAWHINNEY!! We know you have been 5 for a while but your birthday party today was awesome and even though Payton could not go, he was NOT HAPPY about it!! HE lOVES parties!! Being sick is really rough on Payton though and we must get him well before he can get back out into the world of fun--:) I am looking forward to this next couple of months as it is the only time all year that we are not doing some sort of fundraising effort & maybe we can even RELAX a BIT!! I think now about the fact that we raised over $80,000 this year and i am completely blown away!! This is something that we should ALL be very proud of!! It only took about a thousand volunteers to get it DONE!!! Ok, i hope you all escape this terrible illness we are dealing with and i will be back soon! LOVE! Deb

Name: debbie
Email:
Date: August 05, 2004
Time: 10:24 AM

Comments

Update: Payton is about 95% back to normal. Rob is 90% & i am a couple days behind them. What a nasty cold/flu/whatever this thing is. I am just very thankful though that Payton did not get the nastier version of it, and has gotten through on just rest, some meds & the good old filtered air through bipap. Can't beat that. We should have a date soon for the check presentation in miami & I am now working on the thankyou cards. We are not doing any fundraising until October when we do a garage sale. I was going to wait until January or Feb. but there is SO much stuff in storage now and at Robs shop that we need to get it out, so we will have a garage sale in mid October.. After that, no fundraising til we start working on the benefit.. In the meanwhile though, there is a fishing tournament going on this weekend with the professional firefighters of Miramar, where they will donate part of their proceeds to Paytons Pals & on September 12, 2004, the PINK PONYTAIL SALON in Coral SPrings (right by the mall--next to Dan Marino's) is having a cut-a-thon where you can get your hair done and make a donation to Paytons Pals instead of paying for the Haircut/style, etc.. We will have a couple of cool baskets & gift certificates up for raffle and of course refreshments, etc.. it should be a VERY FUN DAY!! We will also be attending the annual walk/run/roll for the Jacob Isaac Rappoport Foundation in November. I will ask Shaina to post more details and information about that here on the board. I believe that it is $20 to walk and they will have a grand prize raffle along with other raffle items & a HUGE day of entertainment and FUN for kids!! I will get more info about that.. OK, SO, i am sure some of you have some ideas or suggestions to help us grow and make things better for next year, so please let me know--email me or give me a buzz anytime--i love hearing and trying new things out & i really want to make each year more and more successful and FUN! We were going to take Payton to the zoo or movies(depending on weather--it has been raining every day!) this weekend but that is going to wait til next weekend & hopefully we will all be in decent shape by then. PS.Congratulations Heather & Russell on your pregnancy!! Love, Deb!

Name: Deb
Email:
Date: August 09, 2004
Time: 10:44 PM

Comments

Hi Guys! I wanted to let everyone know that we have updated our events page and also pics are about to be uploaded--i know i know--you will believe it when you see it!! Love! Deb PS>> ALMOST BETTER & Payton is fine!!

Name: Debbie
Email:
Date: August 11, 2004
Time: 05:08 PM

Comments

Hi ALL! I am looking for pics from the event--if any one has any that they could email or send to me, i would be BIG TIME GRATEFUL!! THANK YOU!! love! deb

Name:
Email:
Date: August 12, 2004
Time: 04:05 PM

Comments

Hi Monkey, I just made a donation through your new Pay-Pal link, how cool that Paytons Pals uses Pay-Pal :'] Well i will see you later. I Love You JELLY.

Name: Debbie Freeman
Email:
Date: August 13, 2004
Time: 09:29 PM

Comments

Hi All! Well, as you can see, we just got our PayPal Donate button up and running!! HOW EXCITING!! I am in the middle of putting together a whole Shopping page for the website where we will sell tshirts, jackets, hats, sweats, tanks, onesies, etc.. on the internet through our Paytons Pals website. PayPal is actually a very cool thing to have and i only wish i would have gotten it alot sooner!! Love to you all! Debbie:) PS>> HAPPY BIRTHDAY MISS JACKIE MAILHE!! WE LOVE YOU & LOOK FORWARD TO CELEBRATING WITH YOU WHEN YOU GET BACK!!!

Name: Debbie
Email:
Date: August 14, 2004
Time: 11:13 AM

Comments

HAPPY BIRTHDAY JEN BERMAN!! WOW!! you are getting up there!! PAyton says he hopes you have a fabulous day cuz it is the first day of the rest of your life!!! THE BEST PART!! See you later!! PS.. we were not affected much by Hurricane Charley--barely even any rain or wind--but for some on the west coast it was complete devastation--i know that Publix is doing a huge drive for items that are needed up there and driving the items up--they are asking for bottled water, diapers, diaper wipes & other misc. items that you can donate by just going to Publix and having the items put in their bins or drop off items in their bins--This the beginning of hurricane season so we are keeping our fingers crossed that we escape anything ugly. Talk soon.

Name: Debbie
Email:
Date: August 15, 2004
Time: 02:57 PM

Comments

HAPPY 5th BIRTHDAY KYLE KAPLAN!!! Payton had SUCH a great time at your party!! He won a couple great items with his tickets and we can't wait for next years bash!! We LOVE the t-shirts!!:) Work tonight and tomorrow too--be back soon-

Name: Mike Murphy
Email: MurphDog0352@bellsouth.net
Date: August 22, 2004
Time: 09:39 PM

Comments

hey deb,rob and big dawg been a really really long time since my last visit i apologize but with moving and everything its been crazy. i am glad to hear everything went wonderful over at the benefit this year i really wish i could've gone but you know how awful the Marines can be with scheduling lol. Anyways gotta run and do some laundry, take care guys and keep doing what you're doing. Mike Murphy

Name: Debbie
Email:
Date: August 24, 2004
Time: 01:06 PM

Comments

HI Michael!! It means alot to hear people say the kind of things you say--thankyou for ALWAYS being there for us even when you are stuck on duty!! I am just glad that you are in the states--Payton is doing great--we are spending the day together today and he says he wants to spend every day with me and me not go to work--i told him that would be great if they would just send mommy money when she doesn't go to work but they don't do that! He said ok. Since it is only three days a week, i think he puts up with it! I have just sent out all the thankyou cards from the event--& start school TOMORROW!! YEAH! DOn't forget about the CUT A THON at the Pink Ponytail in Coral SPRIngs off University near Dan Marino's on SEPTEMBER 12TH!! IT is all day long, and will be lots of fun--all proceeds go to Paytons Pals and there will be refreshments and snacks etc..! See you there!!

Name: Ann
Email: akurtz1974@msn.com
Date: August 26, 2004
Time: 01:00 AM

Comments

This is my first visit to your sight. My little angel has a disease called Leigh's. Through a site called caring bridge I have met a few little guys that are fighting SMA. I am glad to see this webpage. This is my Eli's Page: http://www.caringbridge.org/co/elijahkurtz

Name: Debbie
Email:
Date: August 31, 2004
Time: 10:48 PM

Comments

HI OUT THERE! We have been super busy lately-Payton is doing great--School has started so i have been really trying to keep up with that--projects at work, etc. etc.. We are looking forward to the CUT A THON on the 12th of September at the PINK PONYTAIL in Coral SPrings!! Also, we are having a garage sale on the 23rd of OCtober so if you have any *CRAP* you might want to drop it off at the house or at Robs shop--if you have things that you need me to pick up, let me know & I will call to make arrangements--THANK YOU FOR ALL YOUR HELP EVERYBODY!! Keep your fingers crossed that we do NOT get this hurricane that is coming our way! love, deb

Name: Debbie
Email:
Date: September 01, 2004
Time: 10:55 PM

Comments

ok, so we are now planning for a hurricane--you never know exactly what is going to happen but the tracking says that we are in the outer part of where this thing is going to hit--we are in the path but on the outskirts--we will PROBABLY get really nasty weather for a few days, but you NEVER know what is going to happen--miami wasn't ready for Andrew--Punta Gorda wasn't ready for Charlie--So i think people are a little more scared than normal--everyone is shopping and Walmart/Home Depot/Walgreens/Publix/Gas Stations are all NUTS--I am talking lines around the block and 50 people long in the stores--ROb went to get gas tonight and they were "SOLD OUT" Yeah, I am not kidding--ANyway, keep your fingers crossed--All i care about is Payton and keeping power so he can breathe--we have a generator thank goodness and we are just hoping for the best--we will be at my moms house as she lives in a hurricane ready house (as much as can be anyway) and we DO NOT. We would lose our roof for sure if things got hairy so we are not even going to chance it--Take care everybody and keep all of us in SOUTH FLORIDA in your thoughts! LOVE! Deb

Name: Amy and Lily Barnett
Email: lilyandnathansmom@yahoo.com
Date: September 02, 2004
Time: 03:59 PM

Comments

Hey Deb! Just wanted to say we are thinking about you guys and praying for you all through the hurricane! Yuck! I am glad your going someplace else that is *safer* anyway :) Let us know how you guys make out when you can please. Give Payton a BIG kiss from Lily and myself please!

Name: Debbie
Email:
Date: September 06, 2004
Time: 11:23 PM

Comments

Hi out there! We are home and safe and with power. No damage and other than some trees that were blown down and a weekend at my moms--all is normal. We were very lucky. We were just south of the worst of the weather and all around us people are without power. Payton had fun at gma and gpa's and knew that it was going to rain real hard and that gma's house was stronger than mommy and daddys' house! He was very cute. And patient and good--he is always such a big boy!! I had to work tonight and it was a mob scene--just crazy--i am with some kind of cold/bug that i picked up last week--NOT fun after being so sick last month for so long. BUT, as long as Payton doesn't get it, i am good. Take care everyone & lori, CALL ME!! I know you have no power but you guys have to get to a phone!!!!!!!!!!!!!!! LOVE DEB!

Name: shaina
Email: shaina@ourshootingstar.com
Date: September 07, 2004
Time: 02:44 PM

Comments

hi guys- so glad you are okay. we are back home (we went to miami after the storm to escape the heat of 48 hours without power). adi and i thought about you the whole time. talk soon- love, shaina

Name: Amy and Lily Barnett
Email: lilyandnathansmom@yahoo.com
Date: September 08, 2004
Time: 10:43 AM

Comments

Deb! I am so glad you guys are ok! I was truly worried about ALL of you in Florida but so far the families that I know of see to have made it through fine with very minimal damage THANK GOD! We are actually feeling the last effect of the hurricane all the way up here in Kentucky VERY far north from you all so it HAD to be a huge storm! Hugs to BIG BOY PAYTON from Miss Lily (who happens to be a big girl herself). Deb I need to call you to discuss some things, Lily is starting preschool on Friday (at home with a teacher) and I know Payton is ahead of her so I wanted to find out some tips and advice on things that you guys use. HUGS to you guys!

Name: Jennifer
Email: Jennifer@dtrtinsurance.com
Date: September 08, 2004
Time: 12:22 PM

Comments

Hey Debbie. I am glad to hear that you all are safe! The storm sucked and Ivan does not seem to be giving us any relief. I just read that it took a turn to the right which is bad news for us :( Is the cut-a-thon still on for this weekend? What day is it exactly? I hope everyone is okay. Doesn't Lori live up there in the Saint Lucie area? My mom had some decent damage up in Boynton Beach. Some roof damage and their cars got kind of messed up from some flying debris but they just got back their power last night which is good. They thought they were going to have to wait like 10 days. My prayers go out to everyone that has been affected in some way. Debbie, please let me know about the cutathon. If you could call me, that would be awesome because I do not know if I will have the time to get back on here and see your response. My # just in case u dont already have it is: (954) 695-1768. Love, Jennifer

Name: Debbie
Email:
Date: September 10, 2004
Time: 10:56 AM

Comments

HI OUT THERE!! Thank you Jenn for reminding me about this post!! We have just decided today (me and Michael the owner over at the Pink Ponytail) that it would just be ridiculous to have this cut-a-thon now in the midst of these two terrible storms. We may actually be holed up again Sun/Mon and to expect anyone to come is just too much! We are going to reschedule and i will post when i find out exactly when we are going to have it--SOOO NO CUTATHON THIS WEEKEND and I will be back soon with details for rescheduling! THANKS EVERYBODY AND STAY SAFE IN THIS NEXT STORM! IT LOOKS MUCH WORSE THAN FRANCES!! Also, AMy I will call you for sure as soon as things settle a bit and Jenn P I will call you this weekend! How are you and Rodd doing through all this hurricane stuff?? It has been ok here cuz Payton is fine, but really scary bcuz of the whole electricity thing. Anyway, love to you all and stay safe!!:)

Name: MJ
Email: TWEETYROLL88@aol.com
Date: September 11, 2004
Time: 11:51 AM

Comments

PAYTON!! My buddy! How are you? How's life? I REALLY REALLY hope Ivan misses you. I'm sorry I haven't written in forever. I had major computer problems and neglected my buddies! :( Anyway, as soon as I find a box big enough, I have a package to send to you! ;) Tell your Mommy hi from Brenda & I! XXOOXXOO to you http://www.smasupport.com http://www.mymailsignature.com/fwpdata/b4/43/35/59/2303DC94-AE64-474D-9043-05652F3811A6sig.png

Name: Meg
Email: MVesey@flagler.edu
Date: September 15, 2004
Time: 12:31 PM

Comments

Hey Debbie, I hope everything is good with you all. Everything up here is pretty uneventful, and I guess that is good considering all of the excitment from the hurricanes. I need a bit of your help on my big contraversial English paper. I decided to do it on the choice parents have to make when they have children with fatal illness, so if you could possibly email me back whenever you get a chance that would be awesome, and I will be super greatful! Love, Meg

Name: Debbie
Email:
Date: September 15, 2004
Time: 08:13 PM

Comments

Hi out there! MEg, i will email you for sure--i think it will be a very interesting topic--our article in the sun-sentinel was ultimately about that very thing and it was well done and very interesting.. It is on this website if you want to copy it.. we will talk though.. MJ!! HOW ARE YOU??Long time no hear! Say hi to Brenda and Wyatt and everybody up there--we have survived all the hurricanes so far but i just heard there is another one on the way, so keep your fingers crossed!! NOT FUN. The restaurant business remains busy during these times though and normally this would be the slowest time of the year, so i guess that is one good thing of an otherwise horrible HURRICANE SEASON. WE have actually been very lucky--our friends JUST north of us were still without power in Boca (ANdrea & MOrrie). That sounds like a pain, but with no AIR in this florida heat and you are talking about serious issues. ALSO the Mawhinneys in Pt. ST. LUCIE were without power but have it back now. MUCH of their area was completely devastated and people have told Lori of how their homes "blew away." AND MANY people say that if anything like that ever comes their way again, they will just lEAVE. Apparently going through the 100+mph winds is VERY SCARY>I WOULD IMAGINE SO.. Well, we are sort of taking it easy (compared to fundraising months anyway). I am in school (A&P 2 and a lab). I am taking this class online and so far i don't really love that but we will see. It is definitely more convenient for me, but i really do not like having NO TEACHER interaction at all. & the class "Discussions" over email as about as good as you would guess.. SOO, we'll see.. The lab is at school and that is fine.. Payton has had some fun lately going outside--HE LOVES GOING OUTSIDE.. We open the patio screen and he just checks EVERYTHING out--I MEAN EVERYTHING> We have this little squirrel that must live in our tree just outside the patio cuz he is ALWAYS there.. I mean every single day.. & we stare at him (i think Payton really likes watching the squirrel). Someone told me i should not take Payton outside as the winds from all the hurricanes are carring disease from other continents, etc.. ?? ANY comments on that? I wasn't sure what to say or if that is just ridiculous, so i said thanks and then we went outside and checked out the squirrel.. He has been going to bed earlier and getting up earlier which sux for me cuz i am a night person.. I go to sleep somewhere between 2am and 4am.. I TRY to go to sleep earlier but it just never works out that way.. I am going to work on it.. Well, i guess that is the latest. I want to say a happy angel birthday to little Ryan Nolan who would have been 7 years old today. I know that in heaven he is doing all the things that 7 year olds should and love to do.. I still have no reschedule date for the cutathon yet.. i will post that info as soon as i get it. & the garage sale is a DEFINITE for October 23rd.. 7am to 1pm.. Take care everybody--love deb

Name: Amy and Lily Barnett
Email: lilyandnathansmom@yahoo.com
Date: September 18, 2004
Time: 01:37 AM

Comments

Hey Deb! I have been keeping up with ALL the hurricane stuff, my gosh my plans for moving to Florida eventually might have to CHANGE! Anyway, glad you guys are safe and I hope that this next one (is it Jeanne) misses you guys too (looks like it might) and you guys get no ill effects from it at all! I have been thinking of all our Florida friends through all of this! I have never heard of anything like the hurricane blowing up contaminates but of course I don't live anywhere where I am going to get hit by a hurricane either so I can't really comment on that. Lily loves to go outside too, it is fun to watch her! She started preschool and she is doing 'ok' with it, of course she would rather be doing what SHE wants to do but she is settling in to it. I am going to bug you again NEW PICTURES PLEASE!!! LOL! Actually, when you get a chance can you email me your address? Lily has a little something for Payton. I will look forward to when things calm down and getting to talk to you! HUGS to you all and give the BIG BOY a HUGE hug and kiss from us please!!!!

Name: The Withey's
Email: RyJam282@bellsouth.net
Date: September 20, 2004
Time: 11:05 AM

Comments

Debbie, We just wanted to wish you a Happy Birthday. We hope you had a wonderful day yesterday and we apologize for not calling. We hope your day was very relaxing and non-stressful..:) Give Rob and Payton our love. We love you guys, Jamie,Ryan and Reese. XOXOXO

Name: Debbie
Email:
Date: September 23, 2004
Time: 11:13 PM

Comments

OK--the CUT-A-THON has been officially rescheduled. I am sorry that it is so last minute but we just found out about it--It is THIS COMING SUNDAY!! From 10am-5pm at the PINK PONYTAIL SALON in Coral Springs, west of the mall in the Dan Marino's Restaurant Plaza. It faces the Mall. They will be doing manicures/pedicures, haircuts/styles, highlights, color, etc.. and will be accepting donations on behalf of Paytons Pals! IF there is any way that you can make it, we would be THRILLED! Walk-ins are welcome and gift certificate purchases that day will go towards our cause! THANK YOU EVERYONE! & please email me if you have any questions!! LOVE DEB!

Name: Debbie
Email:
Date: September 24, 2004
Time: 12:18 PM

Comments

OK--DUE TO HURRICANE JEANNE, THE CUT A THON HAS BEEN RESCHEDULED AGAIN! I AM SO SO SORRY EVERYBODY BUT THESE STORMS HAVE BEEN RELENTLESS! WE ARE GOING TO GIVE LOTS OF NOTICE NEXT TIME AND GET THIS THING ORGANIZED & TOGETHER & PLAN FOR AFTER HURRICANE SEASON!!! SO, NO CUT A THON TIL FURTHER NOTICE! THANKS EVERYBODY AND STAY SAFE FROM THESE HURRICANES!!

Name: Uncle Brian
Email:
Date: September 26, 2004
Time: 02:16 AM

Comments

Hi Payton! Hope you're enjoying your hurricane party! LOVE, uncle Brian (and aunt Amy says HI too! -- we love you!)

Name: Debbie
Email:
Date: September 27, 2004
Time: 11:37 AM

Comments

HI everyone! We have been lucky yet again--Jeanne was actually a stronger storm but we did not lose power AT ALL this time so we were very lucky. Our friends JUST to the north of us however, have not been so lucky. Unfortunately, Jeanne hit almost exactly the same coordinates as Frances and thousands of people that were in the middle of a recovery effort are now completely flooded, without power and just complete devastation. This has been the worst hurricane season in somewhere around a hundred years & it is NOT over YET. Wish us luck. Take care everyone. PS> MJ PURK! THank you SO MUCH for Paytons new B4SMA Blanket! IT IS BEAUTIFUL! & Payton absolutely LOVES IT!!!!!!!! We will send you a pic with him using it! Love, deb

Name: MJ Purk
Email: TWEETYROLL88@aol.com
Date: September 28, 2004
Time: 04:55 PM

Comments

Payton! I'm sooooo glad you like your blanket! Can't wait to see a picture of you with it. I'll be praying no more Hurricanes come your (or anyone's) way!!!! Love ya, MJ

Name: Debbie
Email:
Date: October 02, 2004
Time: 12:15 PM

Comments

Hi out there! Things have been busy around here! Finally we have had a weekend with no hurricane warnings/watches/alerts, etc.. Payton was SUPER Constipated for a few days and has FINALLY gotten it all out--HUGE RELIEF for me! We are working a LOT lately as we are really trying to move into a bigger house and are saving as much as we possibly can~~We want Payton to have more room to get around as he gets older and this house is just too small for all of us--The GARAGE SALE IS COMING UP!! THis is our ANNUAL garage sale and ALL PROCEEDS go to Paytons Pals, so if you have any (& I MEAN ANY!!) old crap that you want to get rid of, please bring to Robs shop or our house, or to Outback!! We are really excited about this years garage sale! IT should be HUGE!!! We already have a ton of stuff at Robs shop for it and tons more coming in! If you feel like stopping by, or volunteering, that would be awesome!!! It is from 7am to 1pm on OCTOBER 23rd (SATURDAY) THANK YOU EVERYBODY!! LOVE DEB!

Name: Auntie Amy
Email:
Date: October 02, 2004
Time: 11:56 PM

Comments

Hi Payton! I've been thinking about you a lot lately -- I bought you a cool video about some other kids who were born with SMA too -- it's a cool video and you'll get it this week! Hey, listen, as long as we're on the subject, tell your mom, about the garage sale, instead of "old crap" -- she should really call these items "precious re-saleables," and "one-of-a-kind curiosities" -- both acceptable synonyms for "old crap" according to Roget's, but far, far more appealing to the punters. LOVE TO YOU, MY PRECIOUS NEPHEW! Amy

Name: Debbie
Email:
Date: October 09, 2004
Time: 01:08 AM

Comments

Hi out there~~ The 8th was 2 years since Leah was killed in a car accident. It was a sad day. I have a picture of Leah on my refrigerator (w/Teah) that i have had up since she passed away. I think I am going to keep it up forever and that way, I will see Leah everyday. :) I am thinking of Leahs mom, Daun, her daughter, Teah & step dad, George, tonight and hoping they are finding less pain throughout each day as the time goes by... WE ALL MISS YOU LEAH.

Name: Debbie
Email:
Date: October 09, 2004
Time: 01:08 AM

Comments

Name: Jennifer
Email: Jennifer@dtrtinsurance.com
Date: October 13, 2004
Time: 08:41 AM

Comments

Hey Debbie. Hi Payton. I hope all is well with you guys. Debbie, please give me a call at your earliest convenience so we can see when we can meet up for me to bring some stuff for the garage sale. Well this Friday (15th) would have been my friend Vic's 20th birthday, so its been kind of a depressing week. On Saturday, they are doing a rally for him. Everyone is gathering where they found his body and they are getting all of the news stations out there to get the story out because it was never aired at all and his murder is still unsolved which really sucks because none of us had any closure. His mom is not in the best shape and one of my best friends lost the father of her unborn child. I am going to be a godmother in like 2 months :) I am sooo excited. Well I will stop rambling now. Talk to you later. Give me a call Deb.

Name: Jonathan Haas
Email: blacklab1316@aol.com
Date: October 14, 2004
Time: 03:58 PM

Comments

Hello Freeman's, Marni & I were thinking about you today and were reading all the little stories on the updated site. Payton sure looks like he loves Disney. All our best hope to see everyone soon... Love, Jonathan & Marni

Name: Debbie Freeman
Email:
Date: October 15, 2004
Time: 10:43 AM

Comments

HI OUT THERE!! Jen, I am going to call you today!! Jonathan & Marni, CONGRATULATIONS ON YOUR ENGAGEMENT!! ROb and I can't wait to see you two get married & I am honored to be in the wedding party!! LOVE LOVE LOVE!! Our garage sale last week was cancelled, but it is a GO for this weekend!! This is the community garage sale that our neighbors put together for us! It is at coconut key tomorrow all day if anyone would like to stop by!! We are ALSO having OUR ANNUAL GARAGE SALE ON ROYAL PALM , NEXT SATURDAY!! SOOO, if you have ANY THING AT ALL for the garage sales, please drop them off soon!! We are excited as they should both be great & Then of course we are having our BURDINES/MACYS day on October 30th~~ THis is a day that they offer to all charitible organizations.. You can buy a 20% off EVERYTHING PASS for just $5 and all of the five dollar donations go to the specified charity. We willhave a booth set up there from 8am to 12noon and the store opens up 2 HOURS early just for charity spenders that day!! You have BURDINES TO YOURSELF!! Well, almost anyway!! That should be a fun day and I hope to see many of you there!!!!! I am not sure when the cutathon will be rescheduled for, I will let you know as soon as I do & I think that is it as far as fundraising.. Payton is doing great.. We are in the middle of fighting insurance to keep the RSV shots that they do not want to pay for.. WISH US LUCK.. Take care everybody!!

Name: Meg
Email: mvesey@flagler.edu
Date: October 20, 2004
Time: 05:03 PM

Comments

Hey Deb, I just wanted to drop you a little note to say hello. I am going to come home tomorrow for the weekend, so if you need any help with the garage sale just drop me a line. Also, if you have time this weekend I would love to get together with you to talk about doing some kind event up here it be a golf game or whatever. Let me know. Love, Meg

Name: HEATHER MCDOUGALL
Email: mcdougall33067@yahoo.com
Date: October 20, 2004
Time: 06:58 PM

Comments

HEY, I WILL SEE YOU SATURDAY. I HOPE EVERYTHING IS GOING WELL. CAN'T WAIT TO SEE EVERYONE.

Name: Sari Palmese
Email: sari@dtrtinsurance.com
Date: October 28, 2004
Time: 08:32 AM

Comments

Hi Deb,Rob, and Payton.. it's been awhile. I was ecstatic to hear about your success at the annual benefit, and I hear the garage sale went well too. Jen forgot to mention it to me till after the fact or I would have come.She did tell me about the car accident.. she felt so bad!I am coming to Burdines this Saturday, and look forward to seeing you. Glad to hear you had little damage from the hurricanes; we had to get a new roof, but we are fine now. I am still doing insurance by day and at the Boynton Beach Outback 2-3 nights, and we now have Erin McGiness(sp)and of course I think you know Chad works here, too. So,if you are ever up my way, let me know. God bless and see ya Saturday! Love, Sari

Name: debbie
Email:
Date: October 29, 2004
Time: 11:14 AM

Comments

WOW, time flies. I barely have time to go on the internet anymore!! We are just so busy all the time. Weeks go by too too fast.. The garage sale was awesome! We raised over $800 at my moms house and about $500 at our community garage sale!! MANY THANKS TO ALL OF YOU that either donated or helped out at the garage sales by volunteering!! AND Brian & Polly, what can i say? You both are amazing!! THANK YOU ALL SO MUCH FOR WORKING SO HARD TO HELP US FIGHT SMA!!! The garage sales leave us sore for about two days afterward now. You feel like you work for Rooms to Go while doing them. However, they are a great time and really are fun to do. We have another fundraising event this weekend. Burdines/Macys do an annual fall charity day where they sell 20% passes for $5 and the charity gets to keep the $5 for every pass they sell. They gave us about a week and a half notice, so we did not get to sell as many of these passes as we really could have.. BUT, i still think it will go well, and we have already sold quite a few just in our week and a half.. I will be at the one in Coral Springs, but this fundraiser is good at any Burdines/Macys in Florida on Saturday October 30th and they all will be selling these 20% off passes. They will also be open 2 hours prior to normal store opening JUST for charity people to shop!! This 20% off everything and everybody loves Burdines! So we are hoping for this to be a fun busy day!! The 20% off shopping deal ends at noon so you must go early!!! Thanks to all of you that go and SHOP this weekend!! Please look for us at the welcome table if you go to the store in Coral Springs!! We are also booking the event, working on some literature, planning our check presentation at UM, going to school, signing Payton up for lots of new things, doc appointments, etc.. Robs Birthday is Halloween and November 2nd is our anniversary so we will be out of town for a day or so and also will be taking Payton trick or treating in his new STITCH costume!! Well, we love you all, so take care & I will be on the journal again soon!!

Name: The Withey's
Email: RyJam282@bellsouth.net
Date: November 02, 2004
Time: 01:32 PM

Comments

Rob & Debbie, Happy Anniversary!! Reese say's Hi to cousin Payton. We love you. The Withey's

Name: debbie
Email:
Date: November 04, 2004
Time: 11:18 PM

Comments

Oh, i can't tell you how upsetting it is to write on the journal only to find out that it didn't POST!! it has happened to me SO MANY TIMES!! THANK YOU Jamie, Ryan & Reese for our anniversary wishes!! We had a great week & while it seems like Rob & i have been together for a hundred years, we are truly happy and getting better with each year. Thank you also Roz for the wishes over the phone & Jackie & Jen too!!! I had the absolute best day of my life the other night and wanted to share. Payton & i play this game often where i do sort of a light yell and tickle him. he LOVES it. So anyway we are doing our game like normal the other night before bed & then we are laughing etc and then i start talking to him and asking him questions and we are talking back & forth (paytons talking is his own special noises, etc.) and then i said "i love you" and he said "eeeh eeeh eeehhhh" and even the nurse was like oh my goodness he just said i love you back!! IT WAS FABULOUS! & while i am sure Payton has said i love you a million times already this was for sure the very first time i could understand it clearly! He is an absolute little precious little angelic child.. Have a great weekend everyone!

Name: Debbie
Email:
Date: November 06, 2004
Time: 11:36 PM

Comments

Hi out there! We are very excited to be doing the Jacob Isaac Rappoport walk tomorrow morning and if anyone is interested, please come down! It will be lots of fun (quiet waters park) and there will be lots of great things for the kids, a walk/run, food, prizes, etc etc.. !! Registration is $25 and you also get a tshirt with that~~ Go to ourshootingstar.com for lots more info! Hopefully they will raise lots of funds & awareness about SMA!!! Talk soon!

Name: Debbie
Email:
Date: November 08, 2004
Time: 10:33 AM

Comments

WOW.. The Jacob Isaac Rappoport Walk & Run for a Cure was INCREDIBLE!! It is amazing what they have put together for families and children in the FUN FILLED FANTASTIC DAY OF EVENTS!! If you have CHILDREN or enjoy a nice sunny day, you MUST come out next year!! There was: Face Painting, Characters walking around in full costume talking to the kids, a fire engine driving some of the kids around the area (small engine for kids), an animal farm with all the usual suspects, lunch including chicken, hamburgers, hot dogs, awesome coleslaw, cookies, juice, water, fruit, ice cream, soda, etc.. the dancers were there again (MY ABSOLUTE FAVORITE) and there were raffles, prizes, and prizes for the kids! Around the walk, you find pictures of some of the kids that have sma so that you can put a face to the cause, but honestly, there is nothing sad about this day. It was amazing to look around and know that so many people are willing to get together in the memory of a little boy and all feel very strongly about what it takes to save others from the same fate. Very powerful stuff. There seemed to me to be at least 7 or 800 people there. Shaina said she wasn't sure but it was a TON of people!! & even with all those people, there were plenty of places to hang out, swing, talk, eat, watch the waterskiiers, play, etc.. WHAT A DAY!! Jacob must be very proud of his parents and family for all that they have done to make a difference for kids that suffer from SMA. See you there next year!!!

Name: Debbie
Email:
Date: November 15, 2004
Time: 12:55 AM

Comments

WOW~~ Payton is OFFICIALLY A BIG BOY!! We are the very proud parents of a BIG BOY. Yes, it is true. Payton spent the night at grandma and grandpa's house last night for the very first time ever. I must say it was pretty difficult not to have him at home. BUT, he was SO EXCITED AND HAD SOOOO MUCH FUN that i am just thrilled about the whole thing! We called him last night and he was just amazing. Excited and talking and talking and talking. Rob & I went to a MOVIE. (we saw RAY~~ very very good) and we honestly could not remember the last time we went to a movie together alone. It was nice to do the mommy/daddy time, but i am happy to have him back home today!! Payton is an awesome child. Well, i also want to say that i had an awesome time at the PANCAN walk on Saturday morning. We walked for an hour in memory and honor of Daniel J. Weinberg, who is Marni's beloved father that passed away from pancreatic cancer last year. He was an awesome person and an AWESOME dad to Marni & it was great to be able to do something in his honor and for the great cause of research into pancreatic cancer, which is the #4 leading cause of cancer death. Love to you all & health & peace too! Love, deb

Name: Debbie
Email:
Date: November 21, 2004
Time: 12:27 PM

Comments

HI OUT THERE! Just want to let you all know that a good friend of ours had her car windows smashed in and her purse stolen from her car last week while at a PARK in Boca Raton. Not the safest feeling but it has happened so be SURE not to leave your purse or important belongings in your car while you're out running errands etc.. Unfortunately there are people looking for cars with purses sitting in the front seat to rob.. We are presenting a check to the University of Miami on December 2, 2004!!! This will be a great day and there should be newspaper and television coverage! Thanks TO EVERYONE for all that you have done to help us get to this point!! We are hoping to start some sort of clinical trial down here in south florida for the kids that live in the south east!! That is our next project! We are also working currently on SMA DAY in fall 2005 where we will test the public for free for SMA Carrier status! That should be a great event & I will keep updates on the journal as they come along! Payton helped daddy wash his truck yesterday and is becoming more and more of big boy everyday~~:)

Name: Ashely
Email: Ash4150@aol.com
Date: November 23, 2004
Time: 08:58 AM

Comments

Hey, i work at outback and find Payton's Pals to be so heart warming. I love what everyone has done. I attended the Auction a few months ago and we the Davie outbackers had an amazing time. Just wanted to let you know that I am doing my research paper and power points for my classes on Payton and everything you all have done. Hope all is well.

Name: Meg
Email: MVesey@flagler.edu
Date: November 25, 2004
Time: 12:11 AM

Comments

Hey Deb! I just wanted to drop a little note to wish everyone a Happy Thanksgiving. As I have read Payton is getting so big, and we all know that is something to be thankful for. I hope everyone has a wonderful time with friends and family tomorrow. I've been thinking of you guys! Love, Meg

Name: Talia
Email: ltjgal555@hotmail.com
Date: November 25, 2004
Time: 12:33 PM

Comments

Hey! I just wanted to wish you a very Happy Thanksgiving! I love you all! And I want you to know that I'm thankful for meeting such an amazing family. Happy Turkey Day! Don't eat too much ;)

Name: Withey's
Email: RyJam282@bellsouth.net
Date: November 25, 2004
Time: 08:57 PM

Comments

Happy Thanksgiving!! We love you. The Withey's

Name: Debbie
Email:
Date: November 26, 2004
Time: 12:26 PM

Comments

HI EVERYONE. Ashley, Talia, Ryan & Jamie & Reese, Thank you for the Thanksgiving Wishes & we love you too!! Ashley, I LOVE that you did your report on Payton and SMA. So many of our friends have done that (including Talia!) and that kind of interest and help in spreading awareness is priceless!! THANK YOU!!! & i hope to see you at next years event!! I am trying to put together details for next year over the next couple of weeks.. I had trouble with dates because a good friend ( i am in the wedding) is getting married on July 30th and I may need to have the benefit the week after the 30th, which would be August 6th. If anyone can think of any issues with that date, please let me know right away!!! It looks like we will be going with that date. I am also trying to do a couple big things for next year, so keep your fingers crossed!! We had a nice THANKSGIVING at my moms (& i hope you all had a great Thanksgiving with LOTS of food and relaxation!) but we had a really awful day. As some of you know, our almost 11 year old dog named Gage was sick for a while. We think that she suffered a stroke about a month ago because her eyes were suddenly drooping and she was suddenly blind. She was getting around fine and seemed healthy other than the blindness so we took good care of her & she actually got to the point where she got around really good for a blind dog. Rob would carry her into the car and out of the car and in the end he carried her quite a bit. Her eating had good days and bad days and we also noticed some distention in her belly. Then about a week ago she was sneezing like crazy and we noticed dried up blood where she laid her head to sleep and where she had been sneezing. We took her to the vet immediately and the vet said she had a tumor, cancer and also that we should think about putting her down (this was two days before Thanksgiving). Well, we knew it was time, but since Gage was not in any pain or discomfort yet, and seemed actually very peppy, we decided to share Thanksgiving with her and then go to the vet today. Well, things didn't work out like we planned. Gage was resting comfortably the night before last and Rob & I are watching a movie & all of a sudden I noticed labored breathing. We decided to take her outside to let her go to the bathroom and really take a look at her. Well, that never happened as she could not stand up and if we tried to stand her up she yelped like in incredible pain. It seemed that we should take her to the vet immediately but then we realized it was 2am. We tried calling a couple vets and got voice mails and just knew that no doctor would meet us at 2am the day of a holiday~ Thanksgiving. We truly didn't know what to do. Rob & I were up almost all night petting and soothing her until the am came and Rob took her to the Animal Emergency Clinic (which we found out later was Open over night just like a hospital-good to know for pet owners-they are on Powerline and Hillsboro) Gage could not move herself in the end (this all happened SO FAST-she was fine that morning and afternoon) not even her neck without being uncomfortable. It took some creative and painstaking work to get her into Robs truck and out of the house. By that time, she had urinated all over herself and her bed. Her partner in crime had cleaned up her face and neck (Grunt), but she was in bad shape. This was extremely hard on all of us and as I am sure lots of you understand, we lost a part of our family yesterday. Rob has had Gage for 11 years in Jan. & i have been with Gage for over 6 years. We told Payton that Gage was VERY OLD, and that when you get that old, your body can't take care of you anymore so Gage went to doggie heaven. We do not talk about death and dying around here very often, so this was a big deal for Payton and we have to be very careful because he is very smart and he knows that he is not perfectly healthy and saying the wrong thing could be too much for him to handle. Keeping him positive about his future and positive in general are very important aspects of Paytons care and of his ability to do so well with type 1 sma~We miss you Gage & love you.

Name: Debbie
Email:
Date: November 28, 2004
Time: 01:17 PM

Comments

I want to say thank you to Cindy at Salon 1220 and everyone at the Fraternal Order of Eagles/Lakeside Aerie #4211 For their extremely generous contribution to Paytons Pals!! It is due to the awareness of this disease that we are really making a difference & I am very grateful to everyone for constantly letting people know about Payton and his fight against SMA! It is going to make the difference for thousands of children & maybe even Payton! :) & special thanks to Roz, Paytons grandma in Virginia for always letting everyone know how special Payton is and how much we all can do to help!

Name: ashely
Email: Ash4150@aol.com
Date: November 29, 2004
Time: 02:11 PM

Comments

Hi everyone hope your Thanksgiving was wonderful. I wrote a week or so ago telling you i was doing a project on SMA and Payon. I am now doing a Power Point Project and was wondering if anyone had anything i could but on my presentation, besides what is on the website. I have all kinds of stuff i am using from the Benifit i volunteered at. I was also wondering, at the end of the event you all showed a slide show which had all the kids names and pictures, and it was very nice. I was wondering where or if i could us that. if anyone has any info i can use it would be greatly appreciated. Hope all is well. And everyone one from Davie Outback 1092 sends there love, and we cant wait till the next event. Ashely

Name: Debbie
Email:
Date: December 01, 2004
Time: 05:34 PM

Comments

Hi Ashely! I am going to try to have my husband burn a copy of that DVD so that you can use it for your project. When is the project due? Email me separately so that you can give me an address and i will mail you everything that i think will help!! THANKS FOR WHAT YOU ARE DOING!!.. Tomorrow is the big CHECK PRESENTATION day at UM!! We are super excited and are going to be presenting a check to the Universitiy of Miamim for $60,000!!! That brings our total donated to UM to $110,000 and over $250,000 all together towards research, awareness and ONE DAY, A CURE!!!! I really wanted to start doing scholarships to Disney for sma children but a lot of people seem to think that area is covered. (make a wish etc..) If anyone has any ideas to help sma children now, that is not currently being addressed, I would LOVE to hear them!! If we do not start some sort of scholarship type thing, we are going to do some sort of equipment purchases for people who cannot afford them (like wheelchairs or van lifts or maybe even vans! most of these things are not covered by insurance or medicaid, etc..). Like I said, these are ideas right now, and I am going to get together with many of our volunteers and all the board members and come up with what would best serve the sma community.. IN ADDITION to all the work that we will continue to be doing at the University of Miami.. We are actually currently looking into future clinical trials at the UM so keep YOUR FINGERS CROSSED!! That would be a huge and wonderful thing!! And, we are still on course for "SMA DAY" next fall, where we will test as many people in the public that we can for SMA CARRIER STATUS. Can't wait for the results of that testing. Well, wish us luck tomorrow and I hope that you are all doing GREAT~ Love Deb!

Name: ASHELY
Email:
Date: December 02, 2004
Time: 08:48 AM

Comments

Hi everyone i started my first of 5 presentations on Payton and SMA i did the first Power Point today. I was able to find a slide show of SMA and by the end of the presentation everyone was teary eyed. I talked about that there are so many events and everyone would love to know how to help out. Needless to say i got an "A". - Ashely

Name: Debbie
Email:
Date: December 02, 2004
Time: 06:10 PM

Comments

Hello out there! Today was very exciting! We had our Formal Check Presentation at the University of Miami this afternoon, where they served a catered lunch and did a wonderful presentation on SMA, the sma genes and what they are doing to push forward sma research here in south florida and at UM. With the hard work of SO MANY WONDERFUL VOLUNTEERS we were able to donate SIXTY THOUSAND DOLLARS today to the University of Miami's Genetics Department. We are hoping to bring that total up each year and looking forward to many of years of work with UM. Working with UM has been a pleasure and we feel very fortunate to be so close to those that are helping to save children like Payton! The future holds many good things while we move forward towards the cure, so hang in there everybody. I have learned that being Patient is the key to surviving anything. Taking a deep breath and putting my thinking cap on has gotten me out of many tight spots and this spot is definitely the most challenging of a lifetime. I am so thankful for the support of all of you because with all the thinking in the world i could never do this by myself. No Way. THANK YOU MOM, Carole, Talia and Dionne for being there to support & represent us today & thanks to all of you that would have been there if you could!! We are really going to try to work the presentation around schedules next year! There should be an article in the sun-sentinel about today's donation and in the miami herald too. LOVE Deb

Name: Debbie
Email:
Date: December 03, 2004
Time: 11:57 AM

Comments

Ashely, just read your post! That is AWESOME!! I am so glad you got an A! Thank you so much & if you ever need info or help with ANY projects I would be more than happy! I love that awareness is being spread throughout the year!!!!

Name: Frankie,Claudia
Email: Frank33063@hotmail.com
Date: December 09, 2004
Time: 02:01 PM

Comments

Hi guys, I hope all is well.. We are good, just miss my parents who moved to Ga. near Barbara one of my sisters...It's been a couple of weeks, so it's starting to sink in. We are going up there for Christmas, maybe we won't come back :) Anyway I'm sorry to hear about Gage, i knew she got sick, but i did not know of her passing. I remember When Rob picked her up. Time just flies. Glad to hear everything else is good, I sent Rob an E-card for his b-day, i'll assume he received it, I'm now 36, as of 12/3 Ouch !! what else can ya do. Say hi to everyone... Especially Payton. :) Frank, Claudia & Melyssa...... :)

Name: Chris
Email: c3cpat@yahoo.com
Date: December 16, 2004
Time: 03:19 PM

Comments

Debbie, Rob, and Payton, Happy Holidays!!! I'm very sorry to read about the loss of Gage, it's a terrible thing that he had to go, but at least he went with his family with him where he was loved. We are really looking forward to the holidays, and everyone is doing very well. I hope you all got our card, too! Have a wonderful holiday, and I hope Santa brings Payton lot's of really awesome Shrek toys!!! Love, Chris, Casey, and Rodd

Name: Jennifer
Email: Jennifer@dtrtinsurance.com
Date: December 17, 2004
Time: 02:34 PM

Comments

Hey Debbie, Rob, and Payton! Long time no talk! I hope all is well. I was soooo sorry to hear about Gage. I can just imagine how hard it was for you guys. Dogs are like people (like members of the family)when you have them for so long. I wanted to say that I am sorry I won't be able to make it to your X-mas party tomorrow because my mom is having one tomorrow as well so we have to be up there all day & night. Hopefully, I will see you before Christmas. Maybe I will stop into Outback sometime next week. If I do not see you, have a WONDERFUL Christmas! You guys deserve it more than anyone!

Name: Debbie
Email:
Date: December 18, 2004
Time: 10:57 AM

Comments

Hi out there!! Thank you so much Chris and Jenn about Gage~She really was a member of the family & losing her was really difficult. I am just glad that we found the emergency vet and also that Payton didn't have to see her suffer at all. We have many many good memories of Gage and when we finally move we will bury her in the back yard.. By the way we are not having a party this weekend:) Our friends Carole and Troy are-didn't want anyone to think we are having a gathering and leaving anyone out! I am in the middle of all that goes on for Christmas & break etc.. so after January 1 I will be working on the benefit again--I am so looking forward to next year and all the new things we will be doing/adding! Please let me know if you or anyone would like to help out by volunteering or helping to get items donated or if you have any good ideas!!! Have a great weekend everyone! PS.. Jenn P, i am going to call you after the weekend!! love deb

Name: Debbie
Email:
Date: December 25, 2004
Time: 06:12 PM

Comments

MERRY CHRISTMAS EVERYBODY!! IT is quite fabulous to celebrate Paytons 5TH Christmas with him and our family! As I get older it seems that these events and gatherings are really what life is completely about--the gifts are great and any reason to get together is a good one--but i am happy today cuz i got to wake up to see Paytons face and tell him Merry Christmas and have him say it back to me (at least i think that is what he said!) & also Rob & my mom and my dad and all of our family and friends.. Having each other makes each Christmas a truly joyous and peaceful time of year--Merry Christmas, Happy Hanukah, & Happy Holidays to all of you and yours--Love, Rob Deb and Payton :)

Name: Jennifer
Email: Jennifer@dtrtinsurance.com
Date: December 27, 2004
Time: 11:28 AM

Comments

Hey Debbie, Rob, and Payton. I hope you guys had a wonderful Christmas and that precious Payton got all the toys and stuff he wanted. My Christmas was very good. I hope to see you guys soon. Love, Jennifer

Name: Debbie
Email:
Date: January 01, 2005
Time: 05:51 PM

Comments

HAPPY NEW YEAR EVERYBODY!!! I can hardly believe it is TWO THOUSAND AND FIVE ALREADY!!! I can remember being like 15 and thinking 30 or 35 is OLD, but that 50 was really OLD and 70 was like ???? OLD! Now 70 seems not so old and 50 is Young!! Payton will be turning FIVE this year and last night Rob and I counted our blessings for still having Payton with us to celebrate each of these wonderful holidays as they come- We feel extremely Lucky. I want to say Congratulations to Peder and Mary who got married last night! Congratulations guys!! & also to Robin and Pablo who got married Today! Congratulations and Happy New Year guys!!! We love you all and Cannot Wait for our FIFTH ANNUAL BENEFIT TO CURE SMA!! We are going to really try and have a Fantastic Fifth year so if anyone has any suggestions, ideas, etc.. be sure to let me know soon!! We are trying to secure Nova University as our location and i will post immediately upon finding out that info plus the scheduled date/time-- LOVE & HEALTH TO YOU ALL IN 2005!

Name: Debbie
Email:
Date: January 10, 2005
Time: 12:05 PM

Comments

Hi Out There!! We are planning a garage sale soon, so if anyone has any "CRAP" let me know & we will either pick up or i'll meet you or make arrangements etc.. THings have been hectic as usual but this was probably the least hectic time of the year so it was VERY NICE!! TIme though, to get back in the saddle of fundraising and getting ready for our FIFTH ANNUAL SMA FUNDRAISER!!! "SAY G'DAY TO CURE SMA!" We are SOOOOOO Excited and can't wait to get things started. I will be posting days that we go out and auction item hunt, so let me know if you are interested in helping out on those trips (lots of walking!) ALso, I will have a garage sale or maybe two in the next couple of months just to help out with the benefit and to make this years event really really INCREDIBLE!! Andrea, I will call you this week--i have worked the last several days in a row and haven't had a break but am off tomorrow, so i will be making lots of calls. Also, Jen P I have been meaning to call you 4ever! I will callyou this week too--We are going to DISNEY VERY SOON!! SOOO, that is our big excitement of the year and we are all looking forward to this trip Big Time. :) Love to you all & please write me with any ideas you may have!!!

Name: Greig & Monica
Email: mcardonafallon@msn.com
Date: January 10, 2005
Time: 02:38 PM

Comments

Hi Debbie. I have spent the last two days reading every section of the website. I am still amazed at all the wonderful things you have done through the years! I've known you for so many years and I don't think I've ever told you how I admire you and what you have done. You are an amazing person and mother! As we wait the arrival of our little one, I just hope and pray that we are half the parents that you and Rob are! I know we are far here in NJ, but if there is anything that we can do to help Payton Pals please let me know, I would really love to get involved in any way I can. Thanks for sending me the picture of Payton, we haven't seen him since we moved. Take care. Love Greig & Monica

Name: Michael Murphy
Email: MurphDog0352@bellsouth.net
Date: January 10, 2005
Time: 04:14 PM

Comments

Hey everyone, long time no see/talk....unfortunately work has been pretty rough. I accepted a management position at the rest. and am there ALL the time now. But oh well, hope eveerything is going well and hope to see or talk to you soon deb. Take care everyone.

Name: Meg
Email: mvesey@flagler.edu
Date: January 10, 2005
Time: 10:18 PM

Comments

Hey Deb, I hope your new year is off to a good start, mine is on a roll, fast considering classes start in two days. I have completly moved into my new apartment, wow I didn't know that moving was so much work. I wanted to know if you could send me some more Payton's Pals paper work stuff so I could start looking for auction stuff up in the Jacksonville area. So if you could send me up some stuff I will get on that. My new address is: Meghan Rose Vesey 8335 Freedom Crossing Trail APT. #2804 Jacksonville, FL 32256 I hope everything is wonderful. Love and Best Wishes, Meg

Name: Debbie Freeman
Email:
Date: January 13, 2005
Time: 11:58 AM

Comments

HI EVERYBODY!!! Oh, how i love to hear from you guys!! Megan, I will write to you soon--i am getting new materials made so i want to send you updated stuff--give me about 2 weeks. :) ALso, i want to know all that is going on so i will email you separate-howz school? life? ETC>??? Michael, it was awesome to see you at the restaurant! You have always been one of our most loyal supporters and we LOVE LOVE LOVE YOU!!!! CONGRATS on the NEW MANAGER Position at Goldcoast! They are very lucky to have you over there and i know you will do a great job!!!! Let me know if you guys get together with Jackie again on the Weekend ever and maybe Rob and i can GO!!!!!:):) Monica, thanks so much for all you said, you guys are awesome and will be most excellent parents--that is for sure! I am anxious for you guys to move back down here!!! I will def. keep you updated on what we are doing/how u can help etc.. Please send me pics as they come in--i absolutely loved the 3-D ultrasound--very cool~! I must run errands and hopefully by the end of today i will have the hall booked for the event. It will definitely be the Wayne Barton Civic Center. Nova was FREE (almost free anyway--with just a cleanup/electricity/security fee) BUT, after all the approvals for food, etc.. they said they have NO SATURDAY available in the entire summer or fall. YES, annoying. HOWEVER, The Wayne Barton Civic Center was Fantastic & maybe Wayne will give us a good deal!!! I will post as soon as i confirm the date, time etc ... LOVE LOVE LOVE!~~~

Name: Debbie
Email:
Date: January 14, 2005
Time: 03:12 PM

Comments

CONFIRMATION has been made at the WAYNE BARTON CIVIC CENTER in BOCA RATON, for AUGUST 6th, 2005, for our "FIFTH ANNUAL S'GDAY TO CURE SMA FUNDRAISER!!" We are super excited to get started on planning this years event!! I am trying to make our FIFTH Benefit the BEST EVER, so any help is greatly appreciated!! Love to you all & hope your NEW YEAR IS GOING WELL!!!! ALSO, We would like to send out a HUGE HAPPY BIRTHDAY WISH to our little neice REESE WITHEY who just turned TWO!! Payton is very excited to celebrate his cousins Birthday with her tomorrow & we are looking forward to seeing everyone at the party! Take care everyone!

Name: MJ
Email: TWEETYROLL88@aol.com
Date: January 15, 2005
Time: 08:45 PM

Comments

Hi!!!! Sorry I haven't signed your guest book in awhile. I hope you are doing ok and are enjoying the winter so far. I have a new website! It is <a href="http://www.mjthesmaqueen.com/"> MJ - The SMA Queen</a>....If you want to check it out. If you don't see your website on my friends page (and would like to) e-mail me, and I will put you up ASAP. I hope you have a <img src="http://www.mjthesmaqueen.com/valmiscani.gif">! and remember, <img src="http://www.mjthesmaqueen.com/valani3.gif"> MJ

Name: Jennifer
Email: Jennifer@dtrtinsurance.com
Date: January 20, 2005
Time: 04:30 PM

Comments

HEY DEBBIE AND EVERYONE ELSE! Long time no talk! I am so happy to hear that you have the hall booked for the event already. I am so excited! You know I am down to volunteer on my normal position. Things are going good here. I will fill you in on everything when you call me. I would love to go out with you guys about getting donations and stuff. My friend owns a salon and he definitely said he would donate something prolly for the silent auction. Give me a call when things calm down a lil. I would love to hear from you! Love, Jennifer

Name: Debbie
Email:
Date: January 20, 2005
Time: 04:44 PM

Comments

Hi out there!! We have just posted a ton of INFORMATION on the home page of this website about the EVENT this year. Please feel free to call me anytime with questions,etc..! HI JENN! & MJ!! MJ, I am so glad you liked your gift!! Have fun SHOPPING!! (MY personal favorite hobby!) Jenn, i can't wait to talk to you!! I will def. call you this weekend--things have been hectic again but i want to go over a ton of stuff--I will have a TON of really cool stuff for sale this year and i also want to go over volunteers , price lists, etc.. LOVE LOVE LOVE!!! Deb:) PS. The donation letters are ready but the brochures will be about a week, so let me know if you want me to mail you stuff and if you told me a while ago, just remind me--LOVE YOU GUYS!!!:):)

Name: Debbie Freeman
Email:
Date: January 28, 2005
Time: 11:19 AM

Comments

Time goes by SO FAST!! WE are getting ready to go to DISNEY!! Payotns absolute favorite! He is SO EXCITED! I have been so busy that i have not been on here as much as i'd like to be, but things are good--i have been working on things for the event--i really want to have the best year YET!! I will have the brochures next week (printing is taking longer than expected) but when i do i will get letters out etc.. LOVE YOU GUYS!!!

Name: CAROLE
Email: OHWOOOOOOW@WMCONNECT
Date: January 28, 2005
Time: 03:28 PM

Comments

HI, DEB CAN YOU EMAIL ME A PAYTONS PALS LOGO SO I CAN GET THE LAYOUT DONE FOR THE RACE CAR. ALSO, WHAT DO YOU WANT TO DO ABOUT HOTEL ROOMS FOR THE BENFIT THIS YEAR? SAME PLACE OR NO? LOVE YA CAROLE

Name: MJ
Email: TWEETYROLL88@aol.com
Date: January 30, 2005
Time: 01:32 PM

Comments

Hi !!!! <img src="http://www.mjthesmaqueen.com/image006.gif"> Mickey and I wanted to say HAPPY FEBRUARY!!!! I hope you are doing well today. Mickey says he will see you soon (he can't wait either)!! Big hugs to you and your family! Love, <img src="http://www.mjthesmaqueen.com/MJButterfly.gif"> http://www.caringbridge.com/ny/mjpurk - My Journal http://www.our-sma-angels.com/Margaret/ - My Original Website http://www.mjthesmaqueen.com/ - My New Website

Name: CAROLE
Email: OHWOOOOOOOW@WMCONNCT.COM
Date: January 31, 2005
Time: 09:34 AM

Comments

THE BOCA RATON RESORT AND CLUB. THEY HAVE A BLOCK OF ROOMS ON HOLD FOR US. THE PHONE NUMBER IS 888-503-BOCA. **PLEASE CALL AND BOOK YOUR ROOMS EARLY. INORM THEM YOU ARE WITH PAYTONS PALS FOR SPECIAL RATES.

Name: Meg
Email:
Date: February 03, 2005
Time: 06:32 PM

Comments

Hey Deb! I tried to call to reserve my room for the benefit and they said that they didn't have our event on file? What's up with that? Hope all is well. Miss you, Meg

Name: CAROLE
Email: OHWOOOOOOW@WMCONNECT.COM
Date: February 04, 2005
Time: 06:54 PM

Comments

THE BOCA RESORT INFORMATION.THEY RUN THINGS DIFFERENT FROM OTHER PLACES BECAUSE THEY HAVE SO MANY OPIONS. THEY WANT TO KNOW EXACTLY HOW MANY ROOMS FOR WHICH DATES. THE CHOICES: AAA MEMBER SPECIAL. DO WE KNOW SOMEONE WHO HAS AAA? BEACH GARDEN VIEW WITH GOLF FOR 2 INCLUDES VALET $235 PER NIGHT BEACH OCEAN VIEW WITH BREAKFAST FOR 2 INCLUDES VALET $255 PER NIGHT BEST OF BOCA INCLUDES BREAKFAST AND DINNER FOR 2 ALL CHILDRENS ACTIVITIES VALET AND FITNESS $438 PER NIGHT OR JUST A PER NIGHT TRADITIONAL ROOM $180 LEAST EXPENSIVE GARDEN VIEW $210 BEACH PLACE GARDEN VIEW $180 BEACH PLACE OCEAN VIEW $260 MAIN TOWER $240 PLEASE EMAIL ME SO I CAN BOOK THE BLOCK OF ROOMS. I NEED THE NUMBER OF ROOMS,STYLE/PRICE OF ROOM AND THE NUMBER OF NIGHTS. SO PLEASE EMAIL ME LAST NAMES, ROOM CHOICE AND DATES. OR CALL ON YOUR OWN AND SEE IF YOU CAN GET A BETTER PRICE. SORRY FOR ANY INCONVIENCE. CAROLE OHWOOOOOOW@WMCONNECT.COM

Name: Debbie
Email:
Date: February 05, 2005
Time: 01:10 AM

Comments

HI ALL!! We have definitely blocked rooms for the event at the Boca Raton Resort and Club, so i will find out and get back to you on the web.. LOVE!@

Name: Jennifer
Email: Jennifer@dtrtinsurance.com
Date: February 10, 2005
Time: 11:19 AM

Comments

Hey Debbie and everyone else. As far as the room for the hotel. We will be staying one night and we will take the golf deal for $235. Thanks :) Talk to you when u get back Debbie. Hope u guys are having a blast!

Name: Debbie
Email:
Date: February 11, 2005
Time: 12:33 PM

Comments

HI OUT THERE!! WE are back from heaven on earth-otherwise known as WALT DISNEY WORLD. What an amazing trip. Disney is always amazing, but it gets better each year and especially as Payton gets older!The weather was a little warmer than we are used to at this time which was great until the last day when it was blazing hot--& Payton started to get a heat rash--so that day was cut short. We purposely go when it is *slow* (for DiSNEY anyway)and also COOL cuz Payton does not handle heat well at all. We met Paytons cousin Ashley & my sister in law Holli and her soon to husband Troy the first three days and had a BLAST with them. Payton really enjoyed having another kid to hang with him & Ashley is VERY comfortable with Payton-she almost acts as if nothing is even going on and is very inclusive with him--she also bought him a couple of stuffed animals and won him a few items in the arcade and pretty much hung close to Payton the whole trip-that was awesome. Going with family is always a special treat & we really had a great time with everyone--lots of pictures to show which i am putting on the website-yeah i know you will believe it when you see it!- Again, Disney was incredible in their treatment of Payton when it came to meeting characters & letting him go to the front of lines to meet and have their autographs--toontown was especially spectacular for that--Payton got to go on the Jungle Cruise this year which had a very nice wheelchair lift that put him right in the middle of the boat and he loved it! He also really enjoyed the Luau over at the Polynesian--i think that is one of his very favorite parts of the trip! He stayed awake ALL through Disney this year which in years past he often crashed if he got nervous or over whelmed etc. and this year he stayed wide awake the whole time enjoying every minute of the trip! We went on the monorail several times, the tiki birds, the carousel of progress, Small World was being refurbished which was a huge bummer but we will definitely hit that one next year, Payton went to Pizza Planet and Al's Toy Barn, where he met Buzz, Woody, Jessie & Bullseye. They all spent so much extra time with him and the character meetings are probably the most amazing part of Paytons experience..Can't wait for you to all see the pics and CAN'T WAIT for next years trip! We got Payton two coin banks (one is the monorail and the other is toy story) and he is going to save all our change until next year to help pay for the trip! He is VERY excited to go back!! *****************I have not had much time to reacclamate myself, but i have emailed Carole and it seems that we all must call and decide which *deal* we want at the Boca Raton Resort and Club. For those that don't know, this Club is very exclusive & quite amazing. I chose it because it is the ONLY hotel within a few miles of the event. They offer several packages to our guests including spa packages and golf packages (they have three amazing golf courses). Let me know if you need any help or have any questions about the hotel. I have booked three rooms that i need for family but if you need me to book for you just let me know! Love to you all--& i hope all of you get to make to the magical world of DISNEY at some point with your kids. NOTHING is as good as DISNEY!!!!!!!!!!!!!!!!!!!!!!!!XOXOXOXOOXOXOOXOXOX PS. thanks for making it down Holli & Troy & Ashley! It was SOOO Great to hang with you guys in DISNEY!! WE have to make it an annual affair!

Name: MJ
Email: TWEETYROLL88@aol.com
Date: February 13, 2005
Time: 01:24 AM

Comments

<img src="http://www.mjthesmaqueen.com/polarbear_val.gif"> I hope you have a very happy Valentine's Day! Love, MJ PS> Thanks for signing in at B4SMA. Glad you had a great time at Disney!! LOVE YA!!!

Name: Jill Lustig
Email: jill_lustig@hotmail.com
Date: February 14, 2005
Time: 09:35 AM

Comments

Debbie, I never told you what an impact you,and your family,your friends,and your beautiful spirit had on me. I am here in New Jersey,and find myself sharing your story with so many.... I hope you are all well,and happy. I'll be in touch Jill Lustig

Name: Debbie
Email:
Date: February 15, 2005
Time: 03:42 PM

Comments

HAPPY BELATED VALENTINES DAY EVERYBODY!!! Work was beyond chaos but we made it through and i am exhausted. Thank You GMA ROZ for Payton new Valentines KISS FROG-HE LOVES IT!! ALSO, thank you great gma Helen for Paytons gift and gramma and granpa also--Payton loves all his gifts! MJ, you are the best-Thank You for the Valentines Wishes! Jill, Thank you so much for what you wrote-that is pretty cool to have an affect on someone else in such a positive way and i think honestly that that is what Paytons mission in life has been. He has had such a huge impact on me, Rob, all of our family and all of our friends--that impact will be felt by many for a long long time and that is more than most people can offer the world--Payton thinks he is a super star and an angel face and all these things because everyone lets him know just how special he is, everyday. Can't wait to see you in JUNE-XOXOX everyone-deb

Name: Debbie
Email:
Date: February 16, 2005
Time: 06:33 PM

Comments

HI OUT THERE!! OK, brochures are finally ready to go so if you need donation letter/brochure packets please email and remind me to send them to you--i am currently sending to Holli, Roz, Dionne, Jill, Jen P, Jackie, (jack i have your correct address right??), Lori, Andrea & Tamara.. Kelly, Jen, Talia and Beck I will just give them to you guys when i see you--Megan, what address should i mail to?? Heather, what is your correct address?? WHO AM I FORGETTING??? I am trying to get these out over the next two weeks and mailing out hundreds of donation letters myself so if you want me to just mail one out and you have an address/contact person, just let me know--Thanks EVERYBODY!!!!! XOXO

Name: Meg
Email:
Date: February 16, 2005
Time: 09:00 PM

Comments

Hey Debbie, You can mail it to: Meghan Rose Vesey 8335 Freedom Crossing Trail APT #2804 Jacksonville, FL 32256 I was also wondering if you happen to have a video from when you guys were interviewed for that news story. If you do and could send a copy that would be wonderful. I hope everything is good, that is awesome to here about how great your trip to Disney was. I was just there on Monday, I too had fun. Oh yeah, do you know when the first Saturday outing is going to be? Thanks, Meg

Name: Holli
Email: holliatl@hotmail.com
Date: February 17, 2005
Time: 07:54 AM

Comments

Hi Rob, Debbie and Payton - We had a blast at Disney as well. Thanks for letting us be a part of the trip this year. It was GREAT to see you guys and your parents - especially Payton :). It is nice to get together, but even better when everyone is on "vacation" and away from their busy everyday lives. Although it was only three days - it was quality time with the family. Ashley is already talking about saving up to go next year. Tell Payton hi and we love and miss him all the much in the world. - Holli, Troy and Ash

Name: Debbie
Email:
Date: February 21, 2005
Time: 12:10 PM

Comments

Hi out there--I want to send condolences out to my friend Shay today. Shay and her family-& i am so sorry for your loss and i feel very priviledged to have been at Rick's service and like i got to know him in a way & the service itself was amazing with the gun shots salute and the music-it was extremely moving & i know he will be very missed.. Please help find a cure for cancer by purchasing a Live Strong bracelet-they only cost a dollar and millions have already been raised towards a cure.... Meghan, i will mail to the Jacksonville address and also send that tape--i still have a few left!!:) Can't wait to see you! We will probably start going out on Saturdays in March and pretty much anytime you can go, just let me know, I will be going out quite a bit! Holli, I SO agree and look forward to doing it again next year--Payton has started saving all our change in his monorail coin bank and his Buzz and Woody coin bank so that he can go next year-he is very excited! Gotta go-XOXOXO-

Name: Gina Fimbel
Email: ginafimbel@gmail.com
Date: February 24, 2005
Time: 06:28 PM

Comments

Hi Debbie and Payton, How are you? I haven't visited in a long time but I just wanted to write and say hello and that I think about you two. I can't believe what a big boy Payton is now! Also Debbie, I want to tell you that I am so inspired by all of your wonderful work. It is truly amazing! You work so tirelessly for all of the families who are affected by this horrible disease and I can't thank you enough for that. Seriously, I don't know how you do it - I think you must be Superwoman, juggling all of your life's responsibilities! You are really an incredible human being and I'm honored to know you; if even only over the internet ;o) God Bless you and your family in every way-- Give Payton a kiss for me! Sincerely, Gina Fimbel Mom to Angel Andrew, SMA Type I

Name: Debbie
Email:
Date: February 25, 2005
Time: 12:33 PM

Comments

HI OUT THERE! Gina, it is so good to hear from you! You are pretty inspirational yourself! I know that you have a very passionate spirit and that there is NOTHING you would not do for these kids or the fight for a cure! Thank you for your very kind words--ya know, i must admit that there used to be a time that i would think about all the things i could be doing if i wasn't dealing with SMA--and now i try to think about life without SMA or Payton or all the things we do around Sma and Payton and all i get is one big BLANK. it is so weird how you just adjust and make it work and then it becomes all you live for. I am so wondering how things are going for you Gina and all the etc.. of life--write to me when you have a chance and fill me in--pjf714@msn.com ~~~~~I want to thank Lauri Cooney for having Paytons Pals be there specified Charity to donate to at the new Grand Opening of their SUper Saver in Turtle Runs Shoppes of Coral Springs.. The opening will be in late March (will let you know) and Payton and i will be there to accept a check and do raffles and prizes etc.. We will also pass out literature, pics etc.. THANKS Lauri for thinking of US!! We are very excited! I am also sending out letters like crazy so if you have not gotten yours yet, you should soon--let me know if you haven't gotten them by next week Friday--LOVE you guys so much!!!XO PSS> THank Miss Jen for Paytons HUGGABLE Valentine Bear--that bear is awesome! & SOOO SOOFT:)

Name: Fight SMA SW Desiree's Buddies
Email: swdesireebuddies@hotmail.com
Date: February 25, 2005
Time: 06:27 PM

Comments

Hello, My name is Erin Weisner and I am Desiree's Mother. Desiree is 3 1/2, she has sma II. We started a chapter here in Albuquerque, New Mexico Feb.04'. We have been with Fight SMA Andrew's Buddies since June of 03' we went to the conference they had in Richmond, VA. Last yr we attended the conference in Washington, DC. and This yr we will be attending it again on April 19 and 20th,05' I wanted to introduce my self and Desiree. We are in the process of getting our own web site. until then you can go to www.fightsma.com and click under chapters and then click under Desiree's Buddies. Payton is sooo cute. Desiree's Birthday is June 27, 2000 she's not much older than Payton. How is feeling? Just to let you know you are doing a GREAT JOB!!! Keep up the good work. Best, Erin Weisner 505-897-2SMA(2762)

Name: Tracy and Skylar
Email: ourlilsky@msn.com
Date: February 28, 2005
Time: 11:58 AM

Comments

Hi Payton and Debbie. Looks like you sure are busy. You are so lucky to be in Florida today. We are waiting for our millionth snow storm. Calling for a foot of snow within the next few hours. Skys Disney trip from MAW finally got approved. We are going to go next March. They wanted to send us the end of this year but I dont think that would be smart with a newborn. Guess what.. Sky loss her 1st tooth and she finally has gotten to take her brace off from her fractured arm! Thank Goddness.. that was a pain. Hope all is well. Sending you big hugs!!! www.our-sma-angles.com/Skylar www.caringbridge.org/pa/skylar

Name: Debbie
Email:
Date: March 03, 2005
Time: 09:36 AM

Comments

Hi Out there! Hi Erin! Thank you so much for signing the journal and visiting our website! I saw Desiree's pic in the Andrews Buddies/fight sma front page-she is SOOO CUTE!! You must let me know when your web page is up so i can check it out! & definitely stay in touch-i would love to keep up with Desiree and all she is doing! I Wish i could be going to the Fight SMA conference in April but there is just no way--i have so much going on with the benefit we do each year and work etc.. that its just impossible. I am sure most of you know how it is but there is just no extra time in the day/week/year! Tracy & SKY, it is so weird that you are writing today and esp. cuz you are saying it is SO cold! I JUST mailed you that jacket that i meant to mail you like forever agao--it just never really gets cold enough for a jacket like that around here and i meant to send it to you like ions ago and i just found it (never been worn)--i don't know how well it will fit for now since you are expecting but it is a medium and i figured it would fit you perfectly on any other day! since it is so cold there maybe you can actually get a few wears out of it before next season! I hate to rub it in but down here it is SO INCREDIBLY BEAUTIFUL, COOL, AND SUNNY OUT that it is worth moving for!! The traffic and amount of people down here is beyond your wildest imagination but the weather alone makes each day of road rage worth it!!:) Keep me posted on the pregnancy and please give SKY HUGE HUGS FROM ALL OF US IN FLA ESP> PAYTON!!!! Let me know when you know the dates that you will be in Disney! That is pretty close to when we go so maybe we could hook up some time while you're here--that would be so great to see you guys! PS. What size is Skylar? 5T? LOVE TO ALL! XOXOXO

Name: Tracy and Sky
Email: ourlilsky@msn.com
Date: March 03, 2005
Time: 02:29 PM

Comments

Hi again Den and a VERY handsome Payton!! I love the jacket and it fits great. It will even fit when my stomach expands. Thank you soooo much. Payton is as cute as ever. I will sure let you know the offical dates for our trip. I (and Sky) would be beyond excited to finally meet you and Payton. Yes she is in a 5T. Good guess ;o) Lots of extra hugs and kisses and ok..snow also sent your way.

Name: Tracy again
Email:
Date: March 03, 2005
Time: 02:31 PM

Comments

Your name is Deb not Den.. sorry..also I forgot to add, I was very surprised to get the package. The address you send it to is 2 years old. LOL.. our new address is 59 Beech Street..same city state and zip. Thanks again!!!

Name: Sarah Le Blanc-Ritter
Email: slritter@snappydsl.net
Date: March 04, 2005
Time: 04:06 PM

Comments

I did not know what SMA was until I received your brochure and read it and then looked in the internet for your web and read everything I could about SMA.

Name: Deb
Email:
Date: March 05, 2005
Time: 07:49 PM

Comments

Hi Sarah & Tracy & Sky! I am so glad you like the jacket! I found it the other day and was like OMG-i meant to send it soooo long ago! XOXO Sarah, thanks so much for writing! I love that we are truly able to spread the word about SMA--spreading awareness is the crucial key to raising funds for a CURE!! We are having a garage sale next month (this is the only one i am having til the fall) (the weekend after Easter) so if anyone has ANY THING they want to donate--all proceeds go towards putting together our FIFTH ANNUAL EVENT THIS YEAR!! We want to have a big one, so if anyone wants to help or bake or donate, please let me know and i will make arrangements to pick up or meet or whatever needs to be done--THANK YOU KIM!! and ALSO JENN PALMESE! For already donating to the Yard Sale!& also to Patty & Bobby!! It is a fun day and even though we get up at the crack of crack & feel like we work for Rooms to Go afterward--it is usually a big success and a lot of fun!!! THanks everybody!!! PS>< HAPPY BIRTHDAY LUKE AND ERIC O'LAUGHLIN!! WE HAD A BLAST AT YOUR PARTY TODAY AND PAYTON NOW WANTS A PONY!!!!!!!!!!!!!!!!!!!!!!

Name: MJ
Email: TWEETYROLL88@aol.com
Date: March 08, 2005
Time: 01:53 AM

Comments

Hi: I know that I am early, but I wanted to wish you and your family a <img src="http://pic17.picturetrail.com/VOL815/2822478/6549091/88274216.jpg"> & <img src="http://pic17.picturetrail.com/VOL815/2822478/6549091/88272883.jpg"> I hope you enjoy your Spring!! Love, <a href="http://www.mjthesmaqueen.com/"> MJ </a> MJ Purk

Name: Debbie
Email:
Date: March 10, 2005
Time: 06:27 PM

Comments

HI OUT THERE---Hi MJ!! Hope your spring is coming quick enough!! Weather here has been really good except for the nasty rain storm that hit us for two days straight but now it is sunny and cool out--just perfect!! Payton is great, he went for a walk today outside which he loves and is looking forward to going over grandmas this weekend & also going SHopping! His favorite thing to do!!:)We are working on invitations for the event and also getting things together for the garage sale coming up (weekend after Easter!) We are also getting things going as far as details for the event including linen, silent auction items, volunteers, set up, etc.. etc.. etc.. If anyone has any ideas or suggestions that can help, please email me!! Also, if you are volunteering let me know or know someone that also wants to help, let me know--lots and lots going on so i will keep you updated--XOXO

Name: Crystal Figiel
Email: cfigiel@hotmail.com
Date: March 14, 2005
Time: 04:27 PM

Comments

Hi Payton, It's Miss Crystal from Creative Marketing,I made your Toy Story Quilt and I have another surprise in the works for you.Tell your Mommy and Daddy that I would love to donate a quilt or handmade Teddy bear if they need them for fundraisers. I have been looking at your pictures and I have never seen such a handsome young man as you( don't tell my Jonathan,okay)All my love and prayers to you all.

Name: Jennifer Palmese
Email: Jennifer@dtrtinsurance.com
Date: March 14, 2005
Time: 04:43 PM

Comments

Hey Debbie. It looks like it going to be me, my boyfriend Jesse, and my friend Sayra that volunteered like 2 years ago with me and her husband Ferwin to do the Tshirt and merchandise sales. Also, I wanted to know if a room was reserved for me at the hotel or not. I had replied when someone 1st posted as to asking what type of room you want and i said the golf package. I just dont want to assume there is one for me when there isnt. Just let me know if I should call the hotel directly or just let you guys know. Also, dont 4get about the otehr stuff remaining to pick up for the garage sale. Look forward to talking to u soon. Love, Jennifer

Name: debbie
Email:
Date: March 16, 2005
Time: 03:13 PM

Comments

Hi Miss Crystal! I sent pics for you with Rob to work, so I hope you get them soon!! Payton looks SO big now-you will be surprised! Jenn, that all sounds good to me--We have to get together within the next few weeks to go over what we need to purchase etc.. so i will call you and set up a date--maybe a Sat morning for breakfast or early lunch--i want to make sure we get everything we need!! XOXO Thank You all so much for helping me get all this done--I could never do it without ALL OF YOU!!XOXO

Name: Tori
Email: t5286@ufl.edu
Date: March 22, 2005
Time: 01:30 PM

Comments

Hey Deb, Rob and of course Payton!! Just wanted to say hello from the Swamp and that I'm thinking you always...The Phi Delta Fraternity here at UF just had a huge SMA Ultimate Dodgeball Tournament in honor of Jacob Rappaport who I know is very dear to all of our hearts as well. It was a huge success and has caused a lot of talk about SMA here on campus. If there is anything I can do up here at school let me know, and I can't wait to see everyone soo soon and embark on out Saturday morning outings!!!!! Miss you Deb and always thinking of you....Tor

Name: Debbie Freeman
Email:
Date: March 31, 2005
Time: 11:45 PM

Comments

HI OUT THERE!! Hi TORI!! That is SO cool that you were part of the Dodgeball Tournament up there! I have seen pics of it in the past--it must be a Blast!! MISS You! Can't wait til the summer! We have been searching for a new home lately--we have long outgrown our house and have been looking and looking for what would be perfect for us and for Payton--we can tell it might be a while before we find what we are looking for in our price range! We want to thank the World Adult Kickball Association for having Paytons Pals as their host Charity for their annual Fund-raiser--THey had it at Dicey Rileys and a Great time was had by all and they raised a ton of awareness & funds for SMA!! Special thanks to Joanna and Jeff for keeping us in mind and for all of their hard work and Support!! Going to the game tonight was especially great for us--the weather was perfect and Payton had SUCH a good time! He was talking a mile a minute the whole time and everybody was SOOO nice and we felt Very Comfortable and Welcome there! We can't wait to go back!! Our new PAYTONS PALS BANDS are in (the rubber ones like Live Strong etc..) They are being used for a couple of fundraising contests at Stoneman Douglas but if anyone would like to buy one they are $3. They are royal blue with the Paytons Pals logo and hands embedded in the band. They came out really cool!We are also ordering Youth ones, so let me know if you prefer Youth--The garage sale is going to be NEXT SATURDAY--not this coming but NEXT SATURDAY. if you have anything for me to pick up or if you can drop off that would be FABULOUS, let me know--i have to work all weekend but i can always pick stuff up next week during the week-- LOTS going on with fundraising and Payton but we are hanging in there-hope you all had a Great Easter and things are well--Talk soon. XOXOXO

Name: MJ
Email: TWEETYROLL88@aol.com
Date: April 03, 2005
Time: 11:05 AM

Comments

Hi my friend!! I hope that you had a very happy Easter! I got to go to Ohio and spend time with my family and friends. I put pictures up on my website so http://www3.caringbridge.org/ny/mjpurk/photo.htm check it out, if you want to. Love and warm Spring hugs, http://www3.caringbridge.org/ny/mjpurk MJ

Name: Debbie Freeman
Email:
Date: April 09, 2005
Time: 08:26 PM

Comments

HELLO OUT THERE! We had a fabulous day today at the garage sale! It was hot but not CRAZY hot and we had a lot of help which was Great and we raised $1200 for this years benefit!! We are super excited! THANK YOU SO MUCH to ALL OF YOU THAT HAVE DONATED AND/OR HELPED OUT BY VOLUNTEERING!!!! Carole, i don't even know what i would do if you were not outside at 615am every time we do this! Everyone got to visit with Payton today which was Really nice bcuz he was at the garage sale for the first time ever! HE HAD A BLAST!! We all stayed over g-mas so that this could be possible and also easier on us to set up etc.. Thanks for coming by Laura, Alise, Angela, Talia and Becky, Gary, Cory & Kenny & Matt, Corrine, Tracy, Carole's friends from School, Dionne, Ricardo, Mrs. Gellert, John & TO all those that helped us make it happen--Carole, MOM, Robin Siegel, Kelly & Max, Dad, PAYTON, Tamara, Rob and anybody else i may be forgetting!! If anyone has things i forgot to get (Jenn & Kim) just save them (we have a ton left for next time) and we will use them in a few months!!!! LOVE TO YOU ALLLLLLLLLL XOXO

Name: Debbie
Email:
Date: April 16, 2005
Time: 12:08 PM

Comments

HELLO OUT THERE!! Well, things have been a little nuts lately--we are in the middle of looking/buying a house and the one we thought we had turns out to be a real life "money pit" so it looks like we may be walking from that deal (unless they decide to negotiate a much lower price which will be very unlikely) and continue looking-the problem is that property down here has SKYROCKETED to the point that people can't even afford to buy the houses they live in! VERY FEW houses are for sale and because the demand is so high people are getting what they ask (which is mostly outrageous pricing) and sometimes even more due to bidding wars that have been going on (no i am not kidding) so this can be a real drag, but nonetheless, we are still excited to be moving sometime soon! Payton is doing great--he has been getting out and about almost every day and LOVES all his outings.. He has even spent the night at grandma's a couple of times in the last few months and He LOVES that.. I am sure he thinks its the most exciting thing ever! Benefit plans are coming right along and we are focused right now on Auction items and coordinating things like linen rentals invites chairs tables etc.. LOTSA stuff to do but all good.. The Paytons Pals bands are very cool and selling selling selling--i didn't realize what a hit these rubber bands are but it seems that they are very popular and especially popular with kids right now--they wear them up their arms and have all different kinds! Our Youth ones should be here in a couple weeks--i am looking to make a couple of huge signs so if anyone knows anyone in the SIGN business let me know--HAPPY BIRTHDAY LORI MAWHINNEY!! Can't believe you are THIRTY SIX!!! We are getting up there!!! Time goes by so fast--Love you all--Talk Soon!!!!

Name: Marni
Email: mweinberg@morevisibility.com
Date: April 19, 2005
Time: 01:12 PM

Comments

Hi Deb, Rob, and Sweet Payton :-) I have not been onto this site in such a long time. I wanted to send my love & tell you how sad Jonathan & I are that we will have to miss the benefit this year~~You know that we love to come out and we look forward to it every year. It stinks that our our honeymoon had to fall at the same time as the benefit! We will (of course) make a donation, and say a prayer that we will one day SOON find a cure. Love you you all.... Marni and Jonathan XOXOXOXO

Name: Debbie
Email:
Date: April 22, 2005
Time: 09:52 AM

Comments

HI OUT THERE!! I want to say a HUGE THANKYOU TO Lori Mawhinney, who in Port St. Lucie conducted her very own PAYTONS PALS CANDY SALE at work and raised $200 for SMA!!! That is awesome Lori and we love you soooo much!! I also want to say thank you to all of you that are purchasing and wearing our Paytons Pals bands! They are selling very well and everyone seems to think they are Very Cool! We are still in the hunt for a house which has become really consuming. I can't remember if i posted about what happened w/the last one but after a $35,000 Structural Inspection report we walked from that deal. We have been looking again for the last week and have a couple prospects. Wish us luck! Payton is Very excited about Moving and the fact that he will have so much more room in the house and be able to go Everywhere! We are working on getting him a new Wheelchair so keep your fingers crossed on that one--I can't believe that Payton is almost FIVE years old but this is whats happening-we know we are very lucky and count our blessings every day. XOXO to all.

Name: Andrea Smith
Email: kpax@charter.net
Date: April 28, 2005
Time: 08:38 AM

Comments

Hi! I just heard about your bracelets and was hoping to buy some but couldn't find a link on the site. Could you email me and let me know how to get some? Thanks!!!

Name: debbie Freeman
Email:
Date: April 28, 2005
Time: 06:55 PM

Comments

Hi out there!! Yes, Andrea we absolutely have the bracelets for sale! Thanks for asking~I will email you tonight with info to purchase.. I have pay pal on this site and if anyone would rather pay through Pay Pal and have me mail them the bracelets that is fine too.. You would just have to email me and let me know what the purchase is for (bracelets, sweats, etc..) i also have sweats in Finally--they are $20 per pair and are absolutely FABulous--i honestly wear them almost everyday (my friends will tell you).. Any checks for bracelets or sweats, tees etc.. can be made payable to Paytons Pals P.O. Box 667498 Pompano Beach, Fl. 33069. I will send tax exempt receipts to those who purchase through the mail--with tax id info etc.. WE have FOUND A HOUSE! They accepted our offer on Monday and we are the soon to be proud new owners of a home in "Oakbrook." I believe this a subdivision of Hidden Hammocks and also called Butler Farms.. Blah Blah Blah ANYWAY, we absolutely LOVE the neighborhood.. LOVE the area.. LOVE the park down the street.. AND LOVE THE HOUSE!! We have things to do ($6400 Home inspection) but with the way the market is, we feel very lucky to even find a home that is affordable and be able to get it.. This house had five offers in just a few hours and like 15 showings (all in ONE day).. YAY!! Thanks for all the well wishes--we can' t wait to move! (& PAYTON IS SUPER SUPER EXCITED ABOUT HIS NEW HOUSE!!) We are currently trying to solicit items for the Silent/Live Auctions, so if you know ANyone that can donate Art, Jewelry, Sports Memoribilia, tickets to any event, A DOG, or any other goodies for auction, please let me know and i will contact them or send a letter etc.. LOVE TO YOU ALL~~XO

Name: Debbie
Email:
Date: April 29, 2005
Time: 11:09 AM

Comments

I am posting Bracelet(band) information on the front page of this website SOON--I will also try to put up photos of the merchandise soon too--XOXO

Name: Robin
Email:
Date: April 30, 2005
Time: 01:32 PM

Comments

Hey, great idea! Payton is getting sooo much better. The pics. r so cute! I just really hope we get a cure soon. We all hope. Because we all know everywhere we go we'll allways have an ANGEL. Payton is the best angel I know. Good luck.

Name: Debbie
Email:
Date: May 02, 2005
Time: 10:15 AM

Comments

Hi out there! I want to thank my Aunt Lori and Cousins Molly, Sam and Katie for coming by and visiting with Payton this weekend! He told me today that he had a blast and also that he loved hanging out with Katie! Things have been really hectic around here but we are hanging in there--I JUST got sweats printed and finished this weekend so if anyone wants sweats let me know--They are $20 and these are the ones we live in! I have large and m/s (medium or small are the same size) in black or navy or dark gray--XOXO, Deb

Name: Debbie
Email:
Date: May 14, 2005
Time: 11:43 PM

Comments

HI OUT THERE!! Things are coming along with the house purchase.. It is actually one of the most stressful crazy things i have ever been through or done but definitely so worth it. I am just keeping my fingers crossed that everything works out. I am one of those people that is always worried that the bottom is going to fall out--Today is a very special day in our family--Holli, my sister in law, became Mrs. Holli Adams! Congratulations to Holli and Troy and their wedding day!!5/14/05 I so wish i could have been there and i know you guys are having a great time! WE are sending you the greatest wishes for a lifetime of love and happiness, and Health! XOXO The invites for the Benefit this year should be here by Monday and that will be a big job to get together (of course right while we are packing up our entire house!). Thank goodness i have some GREAT, no FABULOUS Friends that will help me piece together that huge project--We are really working on getting auction items for this year so i am putting the CALL out--if ANYONE knows ANYONE that can get: Sports memorabilia, concert tickets, sports tickets, salon GC's, restaurant GC's, jewelry, artwork, etc.. Please let me know!! These items are a huge part of what makes our benefit SO FUN and a success!! Well, Congrats Holli and Troy--it is time for bed. XOXO

Name: debbie
Email:
Date: May 19, 2005
Time: 05:40 PM

Comments

Hi everyone! Please be patient with our ridiculous amount of spam bogus journal entries--Unfortunately this is a real problem for Laura's websites right now and she is in the middle of rectifying the problem! THANKS LAURA!!! The Blue Paytons Pals bands are really going over really well! I hope the contest goes well over at Stoneman Douglas! I want to thank Brendan for doing all the work on this project and making these bands come out so great and for putting together this great contest over at Stoneman Douglas Highschool! THANKS BRENDAN! You ROCK!! I have been getting with all the girls lately to make sure the benefit goes smoothly and thankfully, things really do get smoother and smoother each year! I am about to start looking for centerpieces so Andréa I am going to be calling you soon! Also, we are about to go pound the pavement for Auction Items (in june)so if anyone wants to join us, let me know! Invites are Almost completed & they will be going out by the end of May--First week of June the latest!! Payton is doing great and talking and talking and talking! Especially today! He has been on a Roll all day! Take care everyone! XOXO

Name: Debbie
Email:
Date: May 25, 2005
Time: 01:20 PM

Comments

HI out there!!! Well, everything went great yesterday-hectic but great and we are currently moving and going nuts! Payton and i are in between my moms and the new house and Angela is moving into our old house! We are so happy that we were able to sell to someone that we know and she is SOO Happy! We are thrilled thrilled thrilled but our work is major and we are pretty beat! All of our best to all of you that continue to stay in touch and i am soo sorry about all this ridiculous bogus entries! I know that many of you come to read and that is just a huge pain in the butt! Laura is working on it though and hopefully it will end soon!! XOXOXO

Name: Debbie
Email:
Date: May 26, 2005
Time: 09:15 AM

Comments

JUST SO EVERYBODY KNOWS-the Paytons Pals phone lines will be down until next Tuesday--Fax and phone line. Our new phone number is working and if you call the old one they give the new number (or just email me and i will give it to you! I am going to do a mass emailing with our new info on it! WE are super busy but i am trying to get invites out by this weekend--Love to you all!

Name: Debbie
Email:
Date: May 26, 2005
Time: 05:46 PM

Comments

PS> i will probably be off line for a few days because i won't have access--you can always call the Paytons Pals line after Tuesday (it is the same number) or email me and i will get back to you as soon as possible-i will be able to get online periodically! XOXO

Name: CAROLE
Email: OHWOOOOOOW@WMCONNECT.COM
Date: May 27, 2005
Time: 11:53 AM

Comments

FYI.. TO EVERYONE COMING TO THE EVENT IN AUGUST. I BOOKED ROOMS FOR $79 AT THE HOLIDAY INN ON GLADES JUST WEST OF 95. PHONE NUMBER 561-368-5200. ONLY 3 MILES FROM THE CIVIC CENTER. PLEASE CALL THEM ASAP TO HOLD YOUR ROOM AND RATE TELL THEM PAYTONS PALS FOR THE SPECIAL RATE. THANKS CAROLE

Name: Chris Cote
Email: Musicote1@aol.com
Date: June 03, 2005
Time: 06:11 PM

Comments

The Bible tells us in Romans 8:28 that "We do know that all things work together for good to those who love God, to those who are called according to His purpose." We might not understand God's will with Paytons life but this scripture tells us to trust that God will use Payton for His purpose. God gave Payton to you, Debbie and your husband, knowing that you would know what to do and it shows through all of your hard work and efforts that He is right. You have the support and prayers of Shirley, Bradley and myself. Please keep us posted of things we can do to help. in Christ, Chris Cote

Name: Meghan Rose Vesey
Email: mvesey@flagler.edu
Date: June 04, 2005
Time: 08:24 AM

Comments

Hey Debbie, Rob, and Payton: I just wanted to drop you a line from Jacksonville. I hope everyone is doing wonderfully. I am so excited for you guys and your new house, that is awesome. You are always in my thoughts. Love, Meg

Name: Debbie
Email:
Date: June 20, 2005
Time: 09:35 AM

Comments

GOOD MORNING WORLD!!! We are FINALLY BACK ON LINE!! I am so thrilled to be back on the internet! I felt so disconnected from everything for TOO LONG! We are totally moved in, and while there are many things to do, change, fix or whatever, including 50 boxes to unpack still, we are just completely thrilled to be in our new home and it already feels like a big happy home. I want to wish Robert and all you fathers out there a big HAPPY FATHERS DAY WISH!! We had a great day and Rob celebrated with Shane, Briannah and Kade, my brother Bob, my parents, my sister Amy and her boyfriend Brian, me, and of course, Payton! We had dinner and cake and ROb had a lovely fathers day! I want to congratulate Talia on her new job at Clinique and we are so Thrilled and excited for you and the fact that you have left the restaurant business!:) I also want to congratulate Matt and Kelly Ernst who also just finally moved this week to Port St. Lucie! I hope the house is FABulous! HAPPY BIRTHDAY WISHES go out to Amy Ratkowski who turned *&%^ on April 11th. HI AMY!!! HOPE IT WAS GREAT!!! and to Kelly Ernst who's birthday was June 3rd!! Happy Birthday Kelly!! Also, A HAPPY 6th BIRTHDAY MAX ERNST!! Hope you had a blast! Kel, we have to get together when you have time to celebrate!! We are going out to get auction items again this Saturday so if anyone wants to help, give me a call or email! Also, we are going out Tuesday the 28th of June for auction items so if anyone can go out that day, let me know!! We are going out a few different days before July, so if anyone can go out, let me know--We are working over time on event plans now, so let me know if you have any ideas, suggestions,etc... Love to you ALL! We can't wait for AUGUST 6th!!!!XOXOXOXOOXOXOXOXOX

Name: Debbie
Email:
Date: June 27, 2005
Time: 08:19 AM

Comments

Hi out there!! I need sizes for all the volunteers for shirts--Meghan, give me a buzz when you get time so i can get all that info from you--All you volunteers out there, please give me your staff shirt (polo type shirts) size as soon as possible! THANK YOU! Things are coming along-we are working on tons of stuff-& things are pretty hectic as usual--We should know the details of Paytons FIFTH BIRTHDAY party by the end of tomorrow and i will be mailing out invites to that--if you don't get one in the next week and a half let me know--addresses are always changing and things get crazy & i want to make sure everyone gets one! XOXO

Name: shaina rappoport
Email: shaina@ourshootingstar.com
Date: June 29, 2005
Time: 09:24 AM

Comments

hi guys- we just got back form the fsma conference and WISH SO MUCH YOU'D COME WITH US ONE YEAR!!!! payton would love to see all the other kids with type one, and to play in the childcare room with them and jordan. i will keep working on you. anyway- we miss you guys, i have to mail my stuff in for the fundraiser and our ad (i hope it's not too late). everyone is so excited that every year we are getting closer to a cure. i will call you soon deb- much love, shaina

Name: Deb
Email:
Date: July 01, 2005
Time: 10:53 AM

Comments

Hi guys! I know i know Shaina, but that is pretty impossible these days! I will get there one day though! Things have started to get really busy around here with the benefit coming in just 5 weeks!! We are taking journal ads up until the 20th of July so you are good Shaina! We didn't get that info on the invite so if anyone has any questions about journal entries or advertisements etc.. give me a buzz at 954-935-6025. We are definitely starting journal work on the 20th but even if you get the info in by that Friday you should be ok--We are super excited and can't wait to see everybody! XOXOXO PS>> Thanks to all you girls that have been coming by and helping me!! I really appreciate it!!

Name: Robin
Email:
Date: July 02, 2005
Time: 08:19 PM

Comments

Payton, you are getting sooo big. Debbie can't wait for the bennifit. I so happy for you the house is great. THANK YOU! Payton is gonna be 5 can't wait.

Name: Robin
Email:
Date: July 02, 2005
Time: 08:22 PM

Comments

Payton, you are getting sooo big. Debbie can't wait for the bennifit. I so happy for you the house is great. THANK YOU! Payton is gonna be 5 can't wait. I'm glad he's gonna make it. he truly is an angel.

Name: Debbie
Email:
Date: July 02, 2005
Time: 10:41 PM

Comments

Invites for Paytons FIFTH Birthday are going out in the morning! Please let me know if you do not get one--things are Really hectic with Event Planning! I want to say thank you SOOO much to all the girls that have been helping me with the boxes, auction items, goodie bags, labels, invites, stuffing, etc etc etc.. I LOVE YOU GUYS!! I could NEVER do all this without you!XOXO Shaina, i got your dads invite back--i think he may have a new address ( just in case he is wondering where his is, i have it on my desk!) Everyone's invites should be there by now, so if you have not gotten an invite to the benefit, PLEASE let me know Right Away! I will get one/another out ASAP. We are SUPER excited to be celebrating Paytons FIFTH BDAY, so that will be a fabulous weekend & I also want to say HAPPY BIRTHDAY TO RYAN WITHEY-MY Brother In Law, Whose Birthday is JULY 4th! What a Cool Birthday Ryan!! Hope it is awesome! & i wish i could be there! At least you will have Payton over!! XOXO Be back soon!

Name: Jill Lustig
Email: jill_lustig@hotmail.com
Date: July 04, 2005
Time: 10:06 PM

Comments

Debbie, I am sorry I missed you the other day. So obviously I did not come to Florida for the summer, but I am going to come in for the benefit. How do I go about doing this? I can still volunteer that day if you need anyone, or I can attend as a guest. Let me know what you think. I am so excited for you ( for the benefit, and for Payton's Birthday!!) 5 years old!! Such a big boy! Well Happy 4th of July. Talk to you soon Jill

Name: Alexandria Siegel
Email: PepperChewy2@yahoo.com
Date: July 07, 2005
Time: 07:22 PM

Comments

HI debbie,Rob,&payton can't wait for the benifite maybe i can help out if there r any spaces available plz i really want to help out and if you want when donations r here just let me know and i can people to get them through to other places here in lake worth you can count on me just e-mail me some up-dates and i'll help out asap love ya.

Name: Aunt Jamie, Uncle Ry & Cousin Reese
Email: JamieWithey@nbty.com
Date: July 14, 2005
Time: 09:36 AM

Comments

HAPPY BIRTHDAY COUSIN PAYTON!!!!!!!!!!!!!! We can't wait to celebrate with you at your party. We love you very much and had to much fun with you on the 4th of July!!! We will see you this weekend. We love you, Aunt Jamie, Uncle Ryan & Cousin Reese. Hi Aunt Debbie & Uncle Rob (Unky Rob)

Name: Marni
Email: mweinberg@morevisibility.com
Date: July 14, 2005
Time: 10:45 AM

Comments

Happy Birthday, Payton!!! We love you and wish you lots of happiness and good things always. Have a great Birthday. Tell your mommy and daddy we say hi! XOXOXOXO, Marni and Jonathan

Name: Lisa Mattiocco
Email: lisa_mattiocco@yahoo.com
Date: July 14, 2005
Time: 12:04 PM

Comments

Happy Birthday Payton!! We are thinking about you up here in Jacksonville, hope you have a FUN Birthday Party!! Much Love, Joe and Lisa

Name: shaina rappoport
Email: shaina@ourshootingstar.com
Date: July 14, 2005
Time: 12:33 PM

Comments

HAPPY HAPPY BIRTHDAY PAYTON!!!!! we remember when we met you- you were turning two. we have learned so much from you and your amazing parents and we are so lucky to have you in our lives. we can't wait to celebrate with you on sunday big boy!!!!! much love, the rappoport family

Name: Jennifer Haws
Email: jenpaws@yahoo.com
Date: July 14, 2005
Time: 12:58 PM

Comments

Happy 5th Birthday Payton!!! I hope you have fun celebrating with your family today (and then on Sunday at your party) and that you get lots of cool stuff! I look forward to seeing you soon!! XOXOXOXOOXOXOX

Name: Jen Berman
Email: Luckystarr0714@aol.com
Date: July 14, 2005
Time: 08:13 PM

Comments

HAPPY BIRTHDAY PAYTON!!!! you are such a big boy. I cant believe that you are already 5 yrs old!!!! you r getting so big. And i love your new puppy Dash, he is very cute. I will see you on sunday at your party. Love always, Jen xoxoxo

Name: Annette Reed
Email: miracleformadison1@mac.com
Date: July 15, 2005
Time: 02:18 PM

Comments

HAPPY BIRTHDAY PAYTON!!!! WOW- five years old!!!! You are so amazing!!!! Hope ALL your parties are fun! Are you going to a movie?? GOOD LUCK with the big event coming up- sure WISH we could be there but we are sending our thoughts and prayers. HUGS too !!! It was so nice to meet Shaina, Adi and their kids at the FSMA conf. They were so sweet and Max had me laughing always!!!! The type 1 luncheon was really special too-thanks! You guys are working hard in Florida!!!!

Name: Sue O'Neill
Email: caseyandcolinsmom@yahoo.com
Date: July 15, 2005
Time: 05:26 PM

Comments

Payton! Happy 5th Birthday! Make sure your mommy puts some birthday pictures up on your site, okay?? Debbie! We received the bracelets today! LOVE them, thank you! Casey and Colin are proudly wearing theirs. I will send you a picture when I get a good one.

Name: carole
Email: shopandclean123@aol.com
Date: July 15, 2005
Time: 07:23 PM

Comments

Hello. I approved this announcement for the on-line WXEL Events Calendar. Please continue submitting event information through this process. If I get the information early enough---at least 1 month before the event---I'll be able to consider some of them for the WXEL TV/FM Community Calendar (broadcast), which I produce every 2 weeks. Thank you...best wishes. Marlene Marlene Figueroa, M.Ed. Director of Community Affairs WXEL TV42 & 90.7FM P.O. Box 6607 West Palm Beach, FL 33405 561.737.8000 x4429 mross@wxel.org <mailto:mross@wxel.org> www.wxel.org

Name: Amy and Lily Barnett
Email: lilyandnathansmom@yahoo.com
Date: July 16, 2005
Time: 12:37 AM

Comments

HAPPY BIRTHDAY PAYTON!!!! I know we are a tiny bit late BUT wanted to be sure to wish you a WONDERFUL 5th birthday!!! I can't believe just how old you are, you are most certainly NOT a little guy now but a BIG BOY! Lily sends you hugs and kisses and says to PARTY HARD!!!! Pictures....Debbie.....PLEASE!!!!!!! :)

Name: Kalair Myrick
Email: kalairsmom@yahoo.com
Date: July 16, 2005
Time: 02:14 AM

Comments

Happy belated birthday, Payton!!! Wow, we can't believe you are FIVE years old already, where does the time go? My mommy remembers talking to your mommy when you were just a little baby, now you are a big kid just like me! We hope you had a wonderful, amazing birthday and we want to see more pictures on your website! We are sending you big (((HUGS))) from Kansas! Love, Kalair Myrick (5.4 yrs w/SMA type one) and family

Name: Debbie
Email:
Date: July 17, 2005
Time: 08:18 PM

Comments

WOW. We have really been busy--i didn't realize how long it has been since i have been on the journal--PAYTON IS FIVE!!!! What an amazing weekend it has been! We promised Payton a new puppy for his fifth birthday so that is exactly what he got AND he got to name him--we went through MANY names before he finally said YES, and it was DASH (From the Incredibles i assume!) He LOVES his puppy! They are soo cute and Dash lays right next to Payton without bothering any wires or tubes and is SOOO good. Dash is adorable. On Thursday we took Payton and his cousins (Shane, 8, Briannah almost 4, and Kade, almost 2) to WANNADO CITY. What a treat! It was so much fun and i could not get over what a GREAT idea that place is for KIDS!! FOr them to learn that money comes from WORK and NOT YOUR PARENTS was the coolest thing ever! I wish they had that when i was a kid!:) Today was Paytons big ANNUAL MOVIE PARTY. We had 105 people (they count per head now, so i know exactly) and it was great!! It was our biggest party yet and all the kids had a blast! We saw WILLY WONKA AND THE CHOCOLATE FACTORY. IT was GREAT! I think i always prefer more of a cartoon type movie for kids this age, but everyone loved it so no complaints. It is hard to find a movie that everyone hasn't already seen, that is for kids, right when his birthday arrives. We usually get pretty lucky though and so far, all the kids have been thrilled with the movie party. We rent one theater out, have chicken fingers, pizza, soda, etc.. cake and then the movie starts after one hour and then we watch the movie and then everyone bolts. It is always very quick but fantastic and fun too! We all sing to Payton right before the movie starts and he loves that--esp. the taste of the cake! He got a ton of great stuff for his birthday.. THANK YOU SO MUCH TO ALL OF YOU THAT COME TO CELEBRATE WITH PAYTON!! IT is a very special day when we celebrate his birthday and to share that with so many Great, Awesome friends is so wonderful and we are very grateful. Thanks to all of you that have left bday messages on the journal too-some of you are in this same fight against sma with us and we APPRECIATE what you do and how you do it, more than you could ever know. Thanks for doing what you do and for being so supportive of all the kids in this situation. We will not stop helping/searching/working to FIND A CURE for this disease & to free these kids & let them lead normal lives.... We got a wheelchair evaluation last week that i really wanted to talk about but i have to go sooooo I will be back soon. PROMISE. Oh & Jill I left you a message-we would LOVE to have you volunteer! Alexandria, send me an email soon! Lets chat about the event! HUGS TO YOU ALL AND XTRA SPECIAL HUGS GO TO ALL YOU SMA KIDS OUT THERE!!

Name: Amy Barnett
Email: lilyandnathansmom@yahoo.com
Date: July 18, 2005
Time: 09:48 AM

Comments

Sounds like a GREAT birthday Deb! Congratulations Payton and I hope you got alot of cool stuff!!!!! I can't wait to hear about your Wheelchair evaluation...is it for a powerchair or a manual chair? I really want to talk with you but I know your always busy....do you think you could sneak a few minutes in for me??? LOL...we haven't talked in ages! I will check back in to read up on the evaluation...HUGS to Payton!!!!

Name: Sayra
Email: Inger1981@aol.com
Date: July 18, 2005
Time: 11:28 AM

Comments

Deb, Once again thanks for inviting us to Payton's birthday. It was a great movie but most of all it was great being able to see Payton turn the big 5:) We're looking forward see you at the benefit in a few weeks. Sayra

Name: Melissa Andrade
Email: me_andrade@hotmail.com
Date: July 27, 2005
Time: 05:05 PM

Comments

Just read Payton's story as I was surfing through SMA sites. He is very cute. My daughter Isabella is a stronger Type II and will be three in October. Good luck with all your fundraising endeavors. Melissa, Wayzata, MN

Name: Debbie
Email:
Date: July 28, 2005
Time: 10:14 PM

Comments

it amazes me how much time goes by without me even having a minute to go on here..I know that as we get older time goes by faster and faster, but i feel like everything is in fast forward as this event is approaching! Marni's wedding is the weekend-and event planning is full force right now-lots of auction items coming in! THanks to all of you that have worked so hard to help get those items! They are definitely a huge part of how we raise so much money & we could never do it without everybody pitching in and networking and asking friends and family to also pitch in and help out! it has been amazing how many people have been touched by Payton and have decided to help out in some way--it is awesome to see so many people want to help! It makes the jerks of the world seem non-existent!:) Well, i just wanted to say hi and let everyone know that Payton is doing great! We are excited for the event and Payton is excited too!! Can't wait to see everybody!!XOXOXO

Name: SARI PALMESE
Email: sari@dtrtinsurance.com
Date: July 29, 2005
Time: 07:43 AM

Comments

Hi Deb, Rob, and Payton. Happy belated birthday, Payton. I heard it was a blast. Looking forward to seeing you at the event. Much love, Sari

Name: debbie
Email:
Date: August 13, 2005
Time: 11:43 AM

Comments

ONE HUNDRED AND FOURTEEN THOUSAND DOLLARS!!!!!! ($114,000!!) That is our INCREDIBLE Total for Saturdays event!!! I really can't thank everybody enough for what they do to make this event a success-it takes a host of people (i am talking hundreds when you include all the volunteers, people that donate, people that come) to make this think work and everybody has stepped up and helped make it happen for our FIFTH ANNUAL FUNDRAISER!! What a GREAT NIGHT! Our live auction is seriously the most exciting thing i've ever seen`! And while i did not think Matthew Green could get any better than he is, HE TOTALLY OUTDID himself this year and raised almost 60,000 on the LIVE AUCTION ALONE!! THAT IS SO INSANELY INCREDIBLE-we all just are in awe!! WE LOVE YOU MATT!!! There are a couple girls that are at my house for days before the event and probably feel like they LIVED HERE!! Carole,(i have never seen anyone with more energy or strength! You are one of my rocks!) Rani,(is there anyone in Springs that you DON"T know! Thanks for getting the 8 THOUSAND DOLLAR DOG!! I wish he was mine! & for everything else you did to help! LOVE YOU!!) Kim(you have provided us with candy at work for a great cause for MONTHS - raising $800 while you were at it!!Thanks for all you did with the SA and for Everything you do!), Tori(YOU found the bows-what else can i say!? The stencils are perfect-i need them every year!), Becky, Talia, I live for you guys(if you aren't doing something for Payton you are doing my makeup or helping me figure out what to do next!LOVE LOVE!)! & Even from as far as Pt. St. Lucie we had helpers-Lori (my best friend for 13 years! LOVE YOU SO MUCH!! Selling candy, talking about payton and spreading the word, getting things donated and all from TWO HOURS AWAY! LOVE YOU!)and Kelly-you ROCK(i know you have had a crazy time-congrats on your new job, new house and huge MOVE & don't forget-this event rocks because of what you do and how you do it-even from 2 hours away! we need you and appreciate you-! Tamara, i know all the way down in Miami you were out asking people to help Payton and love him SO much! and all over broward we had the best girls ever out there doing their thing! THanks Jen B,(always helping while working! spreading the word and being in charge of the whole main room!!) Jenn P,(what you do at the tshirt table rules!) Jenn H, (thanks for helping me walk the rejection/elation streets!& all that picking up on Las Olas) Lauren (&Jason TOO), Jamie Joy(you guys are always there for Payton-i always can count on you!& no matter what you do at the event you are always the last ones there making sure i actually get home and packed up and safe-LOVE YOU!), Kris,(no one can sell raffle tickets like YOU!) Danielle(your makeup baskets RULE!! Thanks for always being there no matter what), Marlee(who knew how good you were at this!?), Maria(the auction sheets came out so awesome this year! Everyone loved them!! Thanks for doing the licensing and behind the scenes work that makes this event happen!), Dionne(how DOES Dionne get the Coolest most awesome items on our Auction??? VMA'S!! AGAIN! Miami HEat -with SHAQ of course, Movie posters, movie tickets for a YEAR, Romero Britto, the list is endless!! Dionne, we have THE BEST Silent and LIve Auction and you make that happen! I couldn't do this without you), all of Coral Springs and Pt. St. lucie Outbackers!! And even more through out the south florida region!! The day of the event i have volunteers that give a WHOLE day to payton that include EVERYONE i have already listed and in addition, Stoneman Douglas Track Team, Jerry, Troy H, Pat, Jason, Jason, John, Nicole, Sari, Jason, Sayra, Jesse, ALL OF DIONNES crew in the silent auction room-ANdy and Larry what you do with those computers is just awesome! Brendan(your media expertise is priceless), my mom(MY MOM RULES. PERIOD) Robert, All the girls at registration and the girls at the door, Cheryl, Lisa, Randy, The list goes on and on and on--Pines OUTBACK you are always there every year and RYan you are just the best, Casey, Kelly F., Sheila, Benson, Adam G, Tanya, Lori B, Paul, Troy, Chris, Shay, Adam K. OUTBACK MANAGERS IN THE HOUSE-YOU GUYS ROCK! Adam G, your speech couldn't have been any better!!! LOVE YOU!!! All the volunteers from OUtbacks in Miami to Stuart!! LOVE YOU TOO!!!! Mike Yovino of Yovino Printing and all the work you donate-You and Kal are AWESOME & the booklet this year was INCREDIBLE!! John Gosselin, the invites came out FANTASTIC THIS YEAR-the BEST YET! THANK YOU! Julie GUy, you ALWAYS come all the way from Miami for Payton and you are an INCREDIBLE HOST! THANK YOU!! Tammy from Striptees! YOu must be so happy that i am not calling you a hundred times a day anymore! Coca-Cola, National Distributing, Premier Beverage, Southern Wine & Spirits, Wente Vineyards, Republic Services, The Great EsSkate, & HILL AIR EXECUTIVE!! YOU GUYS ROCK!! Your sponsorships were AMAZING!! As you can tell, i wasn't kidding about the amount of volunteers it takes to make this event happen--I hope that you ALL HAD FUN!! I appreciate every little single thing you do and how you always talk about Payton and his fight for his LIFE!!! XOOXOXO Deb

Name: debbie again
Email:
Date: August 13, 2005
Time: 11:44 AM

Comments

PS.. Sorry but our server was down for over a week so we have just now been able to post!! Thanks for your patience!! XOXO

Name: Debbie again
Email:
Date: August 15, 2005
Time: 12:04 PM

Comments

We want to send a HUGE CONGRATULATIONS out to Shaina & Adi Rappoport, who just found out that they are having a baby! They just found out that the baby is SMA-Free and they feel beyond blessed and super excited about the new addition to their family!! Shaina & Adi, you are just two of the most amazing, coolest people ever and we love you-love you-love you!! Without Adi, and his lawyer expertise i could Never have started Paytons Pals (which has raised close to $400,000 in five years!!) and for that i will be forever grateful- In addition to that you have not missed one single event and you bring tons of people EVERY year to our event and we appreciate what you do so much!! Shaina i know i can be long winded (some of my friends are going OH YEAH..) but, Your support is one of the things that keeps me going. When so few people understand what its like to have a child with sma, I can look at you two and you just KNOW. Period. Knowing that you are always there for us, is a big deal and we wish you a TON of happiness and some breaks in life when you SO DESERVE THEM!!! We will always cherish Jacob and the impact that his cute little self left on thousands of people!! He will never be forgotten and one day we will all be in his presence again!! Congratulations to you and to Jordan and Max too!! XOXO

Name: Debbie Again AGAIN
Email:
Date: August 15, 2005
Time: 12:12 PM

Comments

OOPS ALMOST FORGOT!! THERE ARE A TON OF BIRTHDAYS IN THE LAST TWO WEEKS!!! First, Alexis-Happy 21st!!! Talia, Cannot wait to get to PF CHANGS! We will have a blast!! Carole HALL< you are what now? 26?? :) LOVE YOU!! All the girls are going out to celebrate with you!! Jackie Mailhe! Miss you so much! Hope it was a great weekend! Jen Berman! I was so honored to be a part of your bday! We all had a blast at dinner and the Hummer was AWESOME!! 21 years old already!! AND YOU LOOK GREAT!! Marlee Kaplan-who is sharing her 35th year with me!! I know your party was FABULOUS!! I am sooo sorry i had to work-i would have been there if i could-i hope Rob was almost as good as having both of us! We will have to celebrate next weekend! Kyle, your bowling bday was excellent! & Payton loved his goodie bags! I love the bowling idea!! Gwen Sumacewski! Happy belated birthday to you too!! HAPPY BIRTHDAY EVERYBODY!! CELEBRATE CELEBRATE CELEBRATE!!!!!!

Name: Forgot one birthday!
Email:
Date: August 15, 2005
Time: 11:51 PM

Comments

Don't think we forgot about you Taylor Pederson!! Hope you are happy to turn SIX!! We have a gift for you whenever your mom finally comes by!! LOVE YOU GUYS!-- Our last garage sale for the year will be in two weeks (i am taking a full break from fundraising for a few months & taking a class at school). If anyone needs me to pick anything up or if you want to drop off at Robs work, etc. that would be great-just let me know-I am working a lot right now to make up for days that i missed during the benefit, wedding, etc.. so things are a little crazy but NOTHING compared to LAST month!!!:) I am thrilled with how things went-we are already about things to make next years event even better and i am SO EXCITED about all the extra time with PAYTON this week and looking big time forward to the even EXTRA time with him in the weeks to come!! ---Not having nursing has turned this house into a home!! Although we are still in the middle of getting medicaid back through another program (payton MUST have medicaid somehow someway and they make you go through hell and back twice to get it)--we won't ever go back to the nursing nightmare we used to have for so long-but we might have them come for a few hours on a few week days so that i can get him out and to appointments etc.. Not having to deal with the nurses and their ENDLESS ISSUES has been a real blessing and i guess things really do happen for a reason! Payton is doing his best ever and we just want to keep that going sooo off we go--xoxooxo deb

Name: CAROLE
Email: OHWOOOOOOW@WMCONNECT.COM
Date: August 19, 2005
Time: 12:50 PM

Comments

GARAGE SALE ON SATURDAY AUGUST 27TH, 2005 AT DEBBIE'S MOM'S HOUSE ON ROYAL PALM.(USUAL SPOT) PLEASE TRY TO COME EARLY. 7 AM. OR LATE (NOON.

Name: Charmaine Austin
Email: chaboo80@hotmail.com
Date: August 19, 2005
Time: 01:16 PM

Comments

These are really inspirational stories of your actual life. Luckily you have each other and a great support unit. Rob and Debbie, you are amazing parents. Keep fighting!!

Name: Debbie
Email:
Date: August 23, 2005
Time: 12:19 PM

Comments

HI OUT THERE!!! We are having our garage sale this weekend!! If you have anything you want to get rid of please give/send/drop off soon!! This is going to be our last garage sale!! We actually have fun doing them, but for the entire year, my moms house, my house and Robs shop are storage for a ton of "CRAP." In our first years of raising money, these sales were so important as they helped us pay for the cost of running our big annual event. But now that we are spreading awareness and becoming more well known, we are having other fundraising events that can help off-set those costs. SOOO, we are no longer having garage sales after this weekend. For those of you that have been helping us with these garage sales over the last few years, we can't thank you enough! Its been like working for Rooms to Go the day of, and lots of moving and lifting and storing for months beforehand. We love all of you and appreciate all that you do--while we won't be doing the garage sales, we will be able to focus on other fundraising possibilities like maybe a golf tournament and things of the like--If anyone wants to come join us this weekend we will be at the same place same time (sat only) and we look forward to seeing you there!!! PS.. Thank you cards are being made for the event so if anyone has an address that they know i do not have, please contact me as soon as possible and ALSO, I have been contacting local media to help us get the word out, so there should be a story about Payton in a very soon issue of the Coral Springs Forum and we are also working on other outlets as i write this--THANK YOU CHARMAINE!! Love to you all & THANKS FOR EVERYTHING!! I look forward to what we can accomplish in 2006!!!

Name: Betsey (Conner Riggs' mommy)
Email: betseycarlisle@yahoo.com
Date: August 24, 2005
Time: 09:24 PM

Comments

Hey Debbie, I'm proud of you and all of your hard work. What you are doing will save lives. Payton just sounds so precious. I wondered if Conner would have liked The Incredibles. I am guessing now that he would have.

Name: Debbie
Email:
Date: August 25, 2005
Time: 10:34 AM

Comments

Betsey, it is so good to hear from you! Congratulations on the baby! I hope everything goes well for you all and i especially wish for good health for your family!! Thanks for all you wrote-I really do hope we can make an impact on children with SMA and their families. I have big plans for this fundraising stuff and I have an awesome support system, so keep your fingers crossed! ~~~ Unfortunately, due to weather, we are canceling the garage sale this weekend--there is just no way we can have it with all this rain and tropical storm Kat coming right at us--We will have it on Saturday September 10th instead and we will continue to collect stuff til then.. As i said before, this is our Last Garage Sale, so if you have anything to get rid of, let me know over the next two weeks. I would have it next Saturday but i am working early and there is just no way for me to do both. Call me for more info or with any questions. Be careful in this weather guys. LOVE! Debbie

Name: Jill Lustig
Email: jill_lustig@hotmail.com
Date: August 25, 2005
Time: 06:57 PM

Comments

Over $100,000!!!!! wow and yah! and more yah!!! I am so glad the night went well. I think of you guys all the time.I certainly thought of you all the whole day on the 6th. There are so few people who make a difference in a lifetime, but you and your family and friends do that everyday. I am so proud of you guys, I hope I can come home and visit soon, but apparently adulthood sometimes gets in the way of vacations... Who knew? Take care always and stay safe in the storm Jill Lustig

Name: Debbie
Email:
Date: August 29, 2005
Time: 12:32 PM

Comments

Hello out there! Well, we weathered Katrina and all we can think about is the poor people of New Orleans and the surrounding coastal areas. It is completely horrifying watching the thousands of cars just packed with what they can't live without and driving as far away from their homes as they can get. I think about what we would do and I shudder. You have a house full of STUFF, Pets that you will not leave behind, Kids, equipment for the sma children! and all kinds of things that won't fit into a car!! I took back any complaints about the fact that we went without power and counted our many blessings that this storm did not turn into anything more than a category one for us.. Hurricanes seem to be more and more vicious as the years go by. I don't remember them being a yearly issue like they are now. Well, we went almost a day without power and had a generator to run Payton's equipment. It was not fun but like i said, NO complaints. We are trying to become even more efficient for future storms and hopefully one day we will have the generator that turns on seconds after you lose power and runs the whole house! THAT WOULD BE AWESOME!! We have set the date for our LAST EVER GARAGE SALE for Saturday September 10th. I am still taking stuff for the garage sale but no more after the 10th. Thank you everybody for pitching in on these sales!! They are ridiculously physically taxing but they are also alot of fun and in some ways I will miss doing them!!! :) Love you guys!

Name: Debbie
Email:
Date: August 30, 2005
Time: 11:24 AM

Comments

HELLO!! We are officially in the Coral Springs Forum (this weeks edition!) Please go out and get yourself a copy of this human interest story on Payton and Paytons Pals and what we have been doing!!! I can't wait to read it myself!! THANK YOU CHARMAINE AND THE CORAL SPRINGS FORUM!!

Name: Debbie
Email:
Date: September 01, 2005
Time: 10:15 AM

Comments

Hello out there!! The Forum article mis-quoted me like 7 times and also wrote three or four completely false statements. I am definitely disappointed but they were trying to do a nice article and there is nothing I can do about it now--SO, Oh well... Next project! We are definitely having our last and FINAL garage sale next Saturday the 10th of September!! Anything you have up until then we are taking but after that we will no longer be doing the garage sales!!! Can you tell I am glad?? :) It is just TOO consuming to do them anymore. Payton is doing great! We are saving our pennies to go to Disney World in February of 2006 and he has a piggy bank that we put all our change in every couple of days. He knows he is saving and contributing so he is very happy about that! He makes money off of his dad by doing "little things" that he asks him to do. IT IS VERY CUTE! My 35th Birthday is coming up--OMG, time is flying! and school is keeping me busy along with signing PAYTON up for school! He is actually finally being enrolled on FRIDAY!! I cannot even believe it! He will be in the homebound program but we are going to the school to sign up Friday and he will be there--Looking super cute in his school outfit. We will be treating school for him like any other kid and he will be wearing school clothes on the day she comes and be ready to go when she gets here!! I HOPE IT IS A SHE!! Hee Hee. Payton is not a big fan of men. Never had been. ANYWAY, hope this email finds you all doing well. We are interested in any sma families in Florida that have a type 1 or type 2 child that has been denied a power wheel chair. If this has happened to you and you live in Florida, please contact me via email or if you know anyone that has, please have them email me. THANK YOU!!

Name: SARI PALMESE
Email: SARI@DTRTINSURANCE.COM
Date: September 02, 2005
Time: 05:46 PM

Comments

Hi Deb, Robb, and Payton.. Payton in school is utterly awesome!! And, what a life you have.. truly beautiful. All of us need to take a step back and be so grateful after the Katrina devastation. Anyway, I love reading about Payton's exploits and you and Robb are true role models of great parents. Anyway.. can you please post the exact address of your Mom's for the garage sale. See you then. Love, Sari

Name: Debbie
Email:
Date: September 08, 2005
Time: 10:50 AM

Comments

HI OUT THERE!! HI SARI! You are absolutely right! It is hard to think that you have any problems at all when watching victims of Hurricane Katrina wading through waters that are waist high with no earthly possession other than the ripped clothes on their backs. We have all heard and watched countless heart-WRENCHING stories about families and children in Louisiana that are just barely hanging on. It is hard to be here with power and a home etc.. and not be able to do much to help them. We have donated to the Red Cross but when you watch tv you just want to jump in your car and start driving there to help! Outback Steakhouse is having dine out day soon where 100% of proceeds of an entire day at Outback (they have almost 800 stores I believe) go to victim relief for hurricane katrina. I will be for sure helping out with that and anything else we can do to help. Let me know if anyone has any ideas!! I will post as soon as I know the exact date for dine out day at Outback--Payton is doing great and we are right in the middle of him getting his paperwork straightened out for school and getting a teacher etc!! He is VERY EXCITED!! We are also working on our newest biggest most awesome project to date: POWER WHEEL CHAIRS for kids with type 1 SMA. This is going to be a major project where we purchase power wheelchairs for kids who have sma type 1, live in florida and have been denied through insurance and/or medicaid. THIS is going to be such a HUGE impact on the quality of life of an SMA child. We are beyond ECSTATIC to begin this journey of impacting these childrens lives in such a positive way!! We are working on formal paperwork and policy/protocol for Paytons Pals as far as who/when/how we admit kids into our program but by the end of the year this will be ready to go and there will be some real independence coming for these kids!! XOXOXOXO I want to thank everyone on my board of directors, all of our volunteers and all of the people that have donated to Paytons Pals (THERE ARE A TON OUT THERE!!). YOU HAVE MADE THIS HAPPEN!!!!!!!!!!!!!!!!!!!!! :)

Name: MJ
Email: TWEETYROLL88@aol.com
Date: September 10, 2005
Time: 03:05 PM

Comments

Hi Friends: I'm SO sorry that it has been so long since I have visited you! I had a very busy summer ,including visits to Ohio, New Jersey, Connecticut, and Virginia Beach. How was your summer? I hope you are feeling well and if you are not, GET BETTER SOON! I will be back soon and will try to sign at least once a month! My banana, Annie Bannie, wanted to say hello to you!

Name: Alexandria Siegel
Email: pepperchewy2@yahoo.com
Date: September 11, 2005
Time: 02:12 PM

Comments

hey Debie it's alex siegel robins cousin just wanted to know if there's anything i can do soon i can't wait to c Payton

Name: Debbie
Email:
Date: September 12, 2005
Time: 11:53 AM

Comments

Hello out there. Well, Payton had a huge crash last night due to a mucus plug that was so thick that we could not even get it to suction through the tube. He is ok now but we came way too close last night to losing him. Keeping him moist and keeping mucus flowing is an around the clock process and sometimes he gets a little dry. That can lead to mucus plugs that are unbelievable. I got called out of work as Rob was working on him for over an hour and today he looks like nothing ever happened. I cannot express the amount of stress involved in such things and what it brings (not just gray hair unfortunately). However, we always just feel terrible that Payton would even have to go through that and often look to ourselves like what can we do better, etc.. Even though we know we do a good job, every hour counts and missing just one neb treatment or having not enough water in the humidifier or forgetting to give water or whatever, just messes everything up. Sometimes (like last night) I feel that i have too much going on and not enough focus on JUST PAYTON. With work, school, fund-raising, the house etc.. there are definitely days that go by that I feel that I have not spent enough time with Payton. And I don't mean that he isn't getting the care that he needs, I mean that I am not taking seriously enough the fact that I do not have any guaranteed tomorrows and shouldn't I just sit in front of him and stare at his face for hours on end so that i can for sure never regret that i didn't??? YEAH, THOSE are not fun things to have to deal with/think about. ANYWAY, I think that with me taking several days off work in the next few weeks due to my 35th bday and my anniversary and Robs bday, etc.. I will make sure to spend every quality moment with Payton that I can. You NEVER get enough time with your kids as you'd like, but you have to make some sacrifices along the way to ensure no regrets. When I think about losing Payton on a weekend that I worked 4 days, had a huge garage sale and spent as much time as possible just trying to rest, (so obviously not spending much time one on one with Payton) I want to literally vomit. I could not even breathe on the way home from work last night not knowing what was happening and begging God to give him more time--I promised to make more time just for him and less for work/etc.. He is definitely worth it. be back soon.

Name: Debbie
Email:
Date: September 15, 2005
Time: 12:23 PM

Comments

Just wanted to say hi and let everyone know that Payton has been great since Sunday.. Thank goodness and we are getting back to work on the things that we have been working on, like SCHOOL, etc.. I wanted to thank everyone that helped with the garage sale this weekend including my mom, Robert, Ricardo, Carole, Kris, Robyn, John, Rani, Chace, Jamie and Jen and also everyone that stopped by throughout the day to check on us or to check out the goods! We raised $600 and I am thrilled to say that we are officially done doing garage sales. THANK YOU SO MUCH to all of you that have had anything to do with the garage sales as they have been hard work and pretty overwhelming with the amount of physical work involved! You have all been great and we are looking forward to moving our focus and efforts into other areas of fundraising that may prove to be more successful financially and also more fun and less sweat!!! LOVE TO YOU ALL!

Name: Amy Barnett
Email: lilyandnathansmom@yahoo.com
Date: September 16, 2005
Time: 11:52 PM

Comments

Deb! First I am so glad Payton is ok, I know how scary that is but I am glad he is ok, our kids are just amazing with how they bounce back so quickly! Thank GOD he is ok. Next, congratulations on your HUGE event! My goodness, that is an amazing amount of money! Big HUGE congratulations to ALL of you who work so hard! Next, how exciting is that about the Powerchairs! Lily got her powerchair in February of this year and she LOVES it! It is amazing to watch her drive around the yard/house/driveway/mall, etc. and while it is still a work in progress with Lily I am amazed at how great she does with it! Does Payton have a Powerchair? I am so glad to hear how great things are going with you guys, I would really love to talk to you sometime and just catch up (after all it has been YEARS now), I know you are really busy......Anyway, hugs to all of you guys and give Payton a big SMOOCH from Miss Lily and of course myself!

Name: Debbie Freeman
Email: pjf714@msn.com
Date: September 18, 2005
Time: 11:50 PM

Comments

Hi out there!! Amy, I just sent you an email--call me soon! Yes, we are super glad/lucky that Payton does as well as he does, and those 911 moments are not fun, but they come with the territory i guess. Some are just a little more intense than i would like for any of us to have to deal with--but what are you gonna do--the best you can do is the best you can expect I guess. We are really making an effort to spend more time focused on family things and less on work and the things that we tend to get too caught up in. Work is sooo important and we all need money, but I have to really spend a little less time at work.. School is going great and they are working on who/when etc.. will be working with Payton from Park Springs Elementary School! Very exciting stuff! We love our new neighborhood and the school that comes with it is just amazing. We love the principal and assistant principal and ESE specialist. We are already planning Paytons trip to Disney in 2006 & figuring out how to "christmas out" this house after Halloween so that Payton can be as excited about xmas as possible.. we know that we are lucky for each day we have and each day we get with each other. xoxoxoxoxo

Name: Jamie, Ryan & Cousin Reese
Email:
Date: September 19, 2005
Time: 10:40 AM

Comments

We would like to wish Debbie a Happy Birthday and we hope you have a great day. We also want to wish Uncle Troy a Happy Birthday as well. We love you all and we'll see you soon. Give hugs and kisses to Cousin Payton from Cousin Reese.

Name: Tori
Email: t5286@ufl.edu
Date: September 19, 2005
Time: 06:28 PM

Comments

Just wanted to wish Debbie a very Happy Happy Birthday with many many more to come. Thinking about you, Payton and Rob everyday, and am only wishing for the best!! Sending GATOR kisses!!!!! Miss you guys like crazy ;-) Love always, Tor

Name: Robin
Email: robineggs407@yahoo.com
Date: September 21, 2005
Time: 07:55 PM

Comments

Hey, guys sorry Deb. about Payton on the 12th I think. Any ways Happy Belated Birthday!!!!!!!! Call,email, text whatever I'll try and help out when ever I can. P.S. Carol nice wig!! (at the garage sale)! LOL. Deb congrads 35! At least its not 40, 5 more years.LMAO. Sorry couldn't help it anyway what I'm trying to say is I'll to whateverit takes to help find a cure for PAYTON!!!

Name: Jennifer
Email: Jennifer@dtrtinsurance.com
Date: September 22, 2005
Time: 12:09 AM

Comments

Hey Debbie. I am so sorry i 4got to call and wish you a Happy Birthday! We were both bad this year lol. I hope all is well. I just had my wisdom teeth removed today so i am miserable bc i am still numb and bleeding yet so hungry. I will be out of work till Monday at least so give me a call if you want some point between now and then and we can maybe start putting together some ideas for the fundraiser for Heather/Shatavia. I love you! Hope you had a good birthday!

Name: Debbie Freeman
Email: paytonspals@mac.com
Date: September 24, 2005
Time: 01:48 PM

Comments

HI JENN!! Yes, lets definitely do something for Shatavia-love her name-something that could be towards college education etc.. I talked to a couple people about that ssi thing and i will chat with you about that when we get together--miss you! THanks for the birthday wishes everybody!! I really had a great day and while i do not feel 35 yet, i am still happy to be here. When i think about the people that have not made it this far or the people that suffer each day from disease or illness, or the victims of all these relentless hurricanes, and all the people out there that do not have a home or place to lay down at night--i feel VERY lucky in so many ways--and i even feel that Payton is lucky in so many ways! We celebrate each year more than when we were kids as we are lucky to have these celebrations together and are very aware of that fact! Someone told me today that his wife was sick with cancer and that he was preparing himself for the end. I say prepare for today and worry about the end later. When its over. Cuz it ain't over til its over. Right? xoxo

Name: Debbie
Email:
Date: September 27, 2005
Time: 10:52 AM

Comments

HEllo out there! I want to say thank you to the WAKA (World Kickball Association!!) for all that they have done to help spread awareness about sma and for the fundraising efforts that they have taken on! John, the president of the league and Joanna, who has spent hours and hours on this, and Jeff and all of the kickballers who come to the parties and participate in the events, have all taken part in helping us find a cure and we are very thankful!! The segment on Sunday night sports final I heard was good and i look forward to seeing it ( i had to work!!) I am finally almost done with the enormous amount of thank you cards that are going out so you will soon see them in the mail!! THis weekend is my getaway with my mom--i am sooo looking forward to that and I thank my wonderful husband for making that happen! I hope to be refreshed and ready for action when i get back--i have definitely felt a bit burnt lately--more than usual, sooo a break will hopefully be just what i need! I hope all of you are doing great and Amy please let me know when you are going to DISNEY!!! It would be awesome to meet you guys there!! XOXOXOXOXO deb PS..... HAPPY SUPER BELATED BIRTHDAY CAROLE!! WHEN IS YOUR NIGHT OUT?!!!!!!! We are ready when you are!! Maybe we could do a big bday celebration over one weekend for ALL the girls next year! I think that would be sooo much easier than getting together for sooo many birthdays!! We will have to chat! XOXOOX

Name: MJ
Email: TWEETYROLL88@aol.com
Date: September 28, 2005
Time: 06:25 PM

Comments

Hi! Happy belated Birthday, Deb!!!!!!!! How are you all doing? How is Payton? Just wanted to stop in and say hi. Love ya'll, MJ

Name: Debbie Freeman
Email: paytonspals@mac.com
Date: October 04, 2005
Time: 09:51 AM

Comments

Hello out there! Lots going on as usual, but i wanted to come on and let everyone know that Payton is doing great! He had a camping weekend here in the house with Robert and grandpa and they had a huge tent up with separate areas for the dogs to hang out and they all slept in the tent Saturday night for their big camping weekend! PAYTON LOVED IT! IT really was a great weekend for him and also for me and my mom! We got a very needed break and what a nice break it was! For me, cruising is the best vacation out there--it is so relaxing, everything is right there and there is so much to do or not do, depending on how you feel! We had a blast and I look forward to cruising again in the future! I am glad to be home though and thrilled to be back with Payton! (& Rob too! :)) We are planning on doing some major activities with Payton this fall and also next spring and summer and I originally was going to have the 6th Annual Benefit in late 2006 but i have decided to have it in spring of 2007. I know it may seem like a long time but it really isn't, and with so many busy schedules these days it will give me so much more time to organize and make our 6th Benefit as Great as it should be! It is impossible to explain the amount of work that goes into that affair but it is safe to say that we could all use a little extra time to plan/organize/schedule/etc.. There is a ton of time that is sacrificed to work on the benefit, so I am trying to spread it out a little thinner so that my family doesn't always feel like I am working on "benefit stuff!" I hope everyone totally understands and will continue to support and be there for us in spring 2007!! I will start working on the benefit in spring 2006, so if anyone wants to help, please let me know! I would sooo appreciate any help at all!! I will be needing help to solicit items for auction, ads for the journal, volunteer work the night of the event, etc.. We are planning on having the event somewhere else this next time, most likely a nice hotel where people can stay and we are even looking into having a golf tournament the day of the event and combining the two events. I will keep everyone posted, but definitely expect our 6th Benefit to be amazing!!

Name: Megan DuVall
Email: Tocutencrazy85@aol.com
Date: October 06, 2005
Time: 05:51 PM

Comments

Hey guys its megan (Jamie, ryan adn Reese's cousin) havent talked to you guys in a long time or even seen you for that matter, but i hope everything is going well and i hope that payton is doing ok (which i know he is b/c he is very strong) just wanted to say hi give payton a big hug and kiss for me. Hope to see you soon.. Megan

Name: Debbie
Email:
Date: October 12, 2005
Time: 09:34 PM

Comments

HI ALL!! HI Megan!! How are you doing? Howz school going-are you done??It has definitely been too long since we have seen you all--hopefully at Christmas we will all get together-I am hoping we can get to Jamie & Ryans for at least a day over the holidays-We get to see Reese tomorrow so we are very excited and Payton knows she is visiting so he is excited too! We have been busy-but knowing that the benefit will take place later is a Huge source of relief for me! I really feel a difference and feel that I can get so many things done that have been neglected for sooo long-Hope everyone is doing great-Payton looks great and is doing great so we are very happy-xoxoxo Deb

Name: robin
Email: robineggs407@yahoo.com
Date: October 13, 2005
Time: 01:32 PM

Comments

Hey guys. Deb I read the comment about the 6th benefit. I wanted to say i'd love to help. It's cool not have to worry about that for a while. How r u guys. I was thinking about a car wash. just let me know when u can. I have some more ideas to. Just give me a hollar when ever. Love you guys.

Name: Deb
Email:
Date: October 14, 2005
Time: 11:40 AM

Comments

HEY ROBIN!! Miss you so much! Where have you been? I wonder how that guinea pig is doing?!!! Give me a buzz when you get a chance! I have something for you for your super belated bday!! XOXO & YES< I am so glad to have some extra time to plan the benefit--It is like a HUGE RELIEF for everybody I think!!! :) XOXO

Name: MJ
Email: TWEETYROLL88@aol.com
Date: October 14, 2005
Time: 04:31 PM

Comments

Happy Halloween! I know it is early but I wanted to make sure I stopped by before Halloween. I hope that you have a great Halloween! If you are looking for some Halloween fun, visit http://www.mjthesmaqueen.com/indexSMG Love, MJ

Name: robin
Email: robineggs407@yahoo.com
Date: October 21, 2005
Time: 01:12 PM

Comments

Hey, yeah how's the pig!? Thinks i think. David and i r going to state for bowling in the special olympics. How's Pay, rob and the dogs, I still have both of your b-day gifts. I'll try and holla at u guys when i get a chance ttyl!

Name: Amy Barnett
Email: lilyandnathansmom@yahoo.com
Date: October 23, 2005
Time: 07:14 PM

Comments

Hey Deb..just checking in and letting you guys know we have you all in our prayers with Wilma coming through, hope you all are ok (I am sure you all are prepared and know the routine!). Big hugs to Payton from Miss Lily and of course myself.

Name: Debbie
Email:
Date: October 23, 2005
Time: 07:40 PM

Comments

Hey out there!! Hi Miss Robin and MJ and Amy and Miss Lily!! We are just now sitting down after preparing completely for Wilma-It is always so much work to plan for these storms and of course they leave everyone on edge-We are hoping to keep power as long as possible and then we have a generator to keep Paytons' equipment going-and also hopefully some AIR! We should get the worst of the storm tonight and tomorrow morning-I just hope it goes through quickly! We are really very excited because Paytons loaner chair should be coming soon-We took him shopping at the mall ALL DAY yesterday and he just LOVED it-Payton loves being around lots of people and things to see and A/C!! Well, we are wishing everyone lots of luck and love through yet ANOTHER hurricane-xoxo Deb PS>> Macys is having a "CHARITY SHOPPING DAY" on October 29th-for the entire day you can get 20% off your purchases as long as you purchase a $5 Discount Card from me (or ROb or my mom) You can do this for any charity but the charity itself must collect the money and then you get the cards to take with you to Macys the day of the event-We won't be there that morning at a booth or any;thing because they would rather you not do that. They provided juice and bagels/doughnuts last year and will probably do that again this year-Payton and my mom and I will be there shopping in the morning so we will be on the lookout for some of our friends! XOXO Call or email me with questions-

Name: MJ
Email: TWEETYROLL88@aol.com
Date: October 28, 2005
Time: 02:38 PM

Comments

Hi! Don't forget to e-mail me a picture of you in your Halloween costume!! <img src="http://i5.photobucket.com/albums/y185/bshanson68/tort.gif"> Can't wait to see Payton cruising around in his chair!! I'm so excited for Payton. How did you weather the storm...hope all is ok!

Name: The Withey's
Email: JamieWithey@nbty.com
Date: October 31, 2005
Time: 12:19 PM

Comments

HAPPY BIRTHDAY UNCLE ROB. We are all still without power but hope you have a great day. Give Payton hugs and kisses for us and hope you have a great night trick or treating if you can. We love you all. xoxo Jamie, Ryan and Reesie

Name: Michael Murphy
Email: MurphDog0352@BellSouth.net
Date: October 31, 2005
Time: 04:35 PM

Comments

Miss Debbie, Rob and Big Dawg: Hey everyone! Got dressed this morning to do some errands and put on my Paytons Pals shirt and realized it has been forever and a day since I came on here and showed you guys some love. Definitly going to do my best to stay more connected. You guys are a great family with a SUPER cause and I wouldn't want to fall away from it! I caught up on your previous posts and sounds like things are doing great! $114,000 at the event?! Good Lord! Thats incredible. And to think how every year that total is only going to grow and grow is incredible! You guys are amazing in every sense of the word. In the world we live in we could definitly use some more people/parents like yourselves. Anyways, I just wanted to stop in and let you know I still think of you guys and respect you guys more then any words can express! Keep it up! I promise to be on here more often...Take Care!! Michael Murphy.

Name: Anissa
Email: jat69er@myacc.net
Date: October 31, 2005
Time: 11:49 PM

Comments

Happy Birthday, Rob!! I just wanted to let you know that the Troia's were thinking of you. I hope you had a great day. Hope you had a nice Halloween, Payton!! I also hope that you all weathered the storm okay. Hugs and kisses to Payton. Take care, guys... Anissa

Name: Debbie
Email:
Date: November 04, 2005
Time: 05:00 PM

Comments

Hello world! WOW- what a crazy couple of weeks-things have been chaotic to say the least and we are still recovering from Hurricane Wilma but as of Halloween night around 6pm we had our home power restored and as of yesterday afternoon Robs' shop was restored. We feel that we were given our life back and are very appreciative of what electricity provides to our lives! We were very prepared for a hurricane with at least three days worth of gas and a huge generator to power Paytons equipment and a tv for news etc.. No air/or hot shower but as long as Payton is able to breathe-that is our only serious concern. Well, after three days and only about five hours worth of gas left we knew we had to make a decision and started calling around to hotels and found one with a vacancy in Miami Beach, It was small with a room that was smaller than my bedroom-but it had electricity and that was what we were looking for. We spent three days there-took Payton out all over miami beach-into the Romero Britto store (Awesome!) and down Lincoln Avenue-he got to see the ocean and it was quite beautiful (weatherwise) all week so he probably felt as though we were on vacation-My mom and I spent each morning on a walk up line for two hours waiting to get gas in cans that we were filling up to bring home with us when the time was right-They had a $20 limit-so there were a few long waits for us but we got through and felt bad for the people on the turnpike and other places that ran out of gas and had to push their cars to who knows where to get gas. It was very chaotic every where you looked as far as gas food etc.. goes and we felt that we could be down there a long time. But on Saturday we heard that stations were opening up and while there were long lines-it was better than being in miami any longer-so we left and came back home to no power but the ability to get gas for the generator. After 8 grueling days we had really had it and all Rob asked for-for his birthday on Halloween- was power and low and behold that is exactly what he got! We really felt this exhilarating thrilling emotion-as if we truly were given our lives back- it was GREAT to say the least. Slowly each day things are getting better and better and traffic is what seems to be the biggest problem now-traffic lights all over are still not working and getting anywhere takes twice as long as it used to-If you live down here or ever have I am sure you can imagine how hellish that must be! I have gone back to work and so has Rob and my mom goes back Monday-My poor dad had to go back two days after the storm and just got power back today (after 12 days!) All I can say, that with everything-you still could not help but think about the people of New Orleans-and wonder just how on earth they handled Katrina-and how they are doing now-I bet a ton of them had to relocate and start their lives over again-and with that in mind-it would be ridiculous to complain about one thing-so-we don't! I hope everyone has power back or will soon!! XOXO Deb PS As far as damage- our screened enclosure looks like someone crumpled it up and threw it in our pool (Rob has already cut it down-) And our HUGE maple tree out front was ripped at the roots from winds and fell over on my car (only a small dent) We lost a few roof tiles and some pool damage- Could have been so much worse!! XOXO

Name: Alexandria Siegel
Email: pepperchewy2@yahoo.com
Date: November 06, 2005
Time: 10:19 PM

Comments

Just wanted to say hi and hope to see ya soon give my love to the family for me see ya soon

Name: Debbie
Email:
Date: November 10, 2005
Time: 09:54 PM

Comments

Hello out there! Just wanted to report that payton is getting his public school evaluations and will have his teacher finally coming out! (this process takes a lot of evals and paper work etc.. but will be very worth it!) He is SOOO excited! He has outfits to wear for his teacher and a backpack and everything! He is also getting a new wheel chair eval next week to see how he does with a power chair so keep your fingers crossed! We are really hoping he can gain some independence-that would be HUGE! Please be sure to watch the Home Make over Show on Sunday November 20th-it will be an sma family that receives the makeover! This should be a huge awareness show for sma! Well, we are still recovering from the storm but we are with power so all is good- xoxo to all-

Name: MJ
Email: TWEETYROLL88@aol.com
Date: November 12, 2005
Time: 07:17 PM

Comments

Hi! How are you? I can't believe it is already November! It has been nice and warm here so I am not ready for Thanksgiving. Hope you are able to enjoy the upcoming holidays! Have a great week! <img src="http://mjthesmaqueen.com/pilkids.gif"> MJ www.mjthesmaqueen.com

Name: Debbie
Email:
Date: November 15, 2005
Time: 01:09 PM

Comments

Hello out there!! We are working hard on a new project called "PROJECT SUPERBIKE" We have encountered many horrifically sad situations over the last five years. I have seen families that barely hold it together yet the love in those families is fiercely strong. While there are many things that families that take care of sick people need- I have decided to pick the thing I think could help the most and focus on it--SOO, while there are many problems/need to pick from-the thing I see over and over is --moms in need of alot of help and kids that ride around on wheelchairs that barely function. SOOO, THIS is where we are going to step in-First, the wheel chairs and in the future we will come up with one thing we can do for moms to help-- (ANY IDEAS OUT THERE? PLEASE SHARE AS WE ARE COMMISERATING ABOUT THIS AND WELCOME TO ALL IDEAS!) FOR NOW THOUGH, I am only focusing on the Wheel chairs. We will be donating the majority of what we raise to help find a cure and hopefully we will be able to purchase a chair or two or three per year for an sma child in need!! We have found that these chairs can be awesome-they can have the latest technology and adjustments suited to individual children and cool colors with fiber optic technology and regular maintenance etc.. etc.. HOWEVER< this is not what most kids get. Most kids get what I saw in the crowded Medicaid office (we no longer receive medicaid-they dropped us due to income) where we waited over THREE HOURS to be seen and I almost had a nervous breakdown that so many children with the MOST SPECIAL NEEDS could be treated like sick cattle... IT WAS TERRIBLE> These kids receive a new chair every FIVE years! Can you even imagine? And the chairs are often refurbished pieces of %&*(( NO SPECIAL seating or joystick-no regular maintenance-the kids who get any attention at all are the ones who's moms are completely losing it in those offices and those moms pay dearly (with their sanity)with what they sacrifice for those children. We should not have to give up our entire lives, career etc.. to fight each and every day (with the most inconvenient of circumstances ie.. dragging my child and all his 20 pieces of equipment and the toll it takes on him to get to these appointments where somebody may or may not even speak to me about the things that we should NOT HAVE TO FIGHT FOR!!) It is SOO Beyond RIDICULOUS that i can barely even talk about it without getting VERY annoyed. There is only so much a mom can do that can't even leave her house without someone coming over to help get her child in the car and then drive so that he can be suctioned etc.. while en route. etc... etc.. etc.. etc.. MY PART in this is to help these families/moms get some relief. It seems the thing these kids need the MOST and have the HARDEST time getting is mobility. Medicaid has translated the federal governments guidelines to suit their financial desires and they now designate about 9 million of 14 billion per year (in the state of florida) towards wheelchairs. That may sound ridiculous but that is why people like Payton get turned down for power chairs (he was turned down before we got booted). And why children who can't even fit in their old chairs anymore can't get one until five years go by. I could go on and on and on. ANYWAY, we are going to help. I have found a company that will work together with us on price and we are going to get these kids the mobility (quality of life!) that they deserve and we are just going to do it. period. I am sick of waiting for help from organizations that do every thing they can to just blow you off or wait you out-alot of times they look at prognosis and figure you'll die before they answer or get back to you-If they wait LONG ENOUGH some kids will.. It is DISGUSTING. Just because you are not born perfect you should not live in deplorable conditions nor should your family. You pay taxes so that these things are taken care of and they are not! TOO MANY HANDS IN THE POT keep that money from getting to where it is INTENDED!! Well, thanks for listening and thanks for donating and thanks for helping me help innnocent children get the joy and independence and LIFE that they deserve!! I hope for PROJECT SUPERBIKE to be a huge success and we may have a walk/run in the spring of 2006 to help fund it!!! XOXOXO

Name: Robin
Email: robineggs407@yahoo.com
Date: November 19, 2005
Time: 01:52 PM

Comments

Hey, Sorry it took me a while to catch up wit u. Rob, happy belated b-day. Deb are you going to the mall tomarrow for the closing sales. my mom and I just wanted to get some tickets. call me when you get a chance or email me. k. holla at you later.

Name: MJ
Email: TWEETYROLL88@aol.com
Date: November 20, 2005
Time: 02:07 AM

Comments

Hi! Just wanted to wish you an your family a very happy Thanksgiving! Have a great day and I hope you enjoy yourself with your family! <img src="http://mjthesmaqueen.com/PILGRI317.gif"> If you send me a picture of you and your family or just you, I will add it to my page next week! <img src="http://mjthesmaqueen.com/trkyb5wscp_e0.gif"> MJ http://www.caringbridge.com/ny/mjpurk

Name: Tori
Email: t5286@ufl.edu
Date: November 23, 2005
Time: 01:06 AM

Comments

Hello Freeman family!! My apologies for taking so long to get back on the board, but just want to wish you guys a very happy and healthy Thanksgiving... its around that time of year that we realize just how lucky we are, and how thankful we should be. Hope the recovery from Wilma is going smoothly, along with everything else. I miss you guys!!! Happy Thanksgiving from the 'Swamp' and I'll see you just before Christmas!! Hugs and Kisses, Tori

Name: Talia
Email: ltjgal555@hotmail.com
Date: November 24, 2005
Time: 11:15 AM

Comments

Hey Deb and Rob and of coarse PAYTON! I just wanted to say HAPPY THANKSGIVING! I am so thankful to know such an amazing family! You guys amaze me everyday. Have a wonderful day and congrats on your first thanksgiving in your new house!!! YAY!

Name: Debbie
Email:
Date: December 01, 2005
Time: 12:22 PM

Comments

HI OUT THERE!!! MJ< TORI< TALIA!! Happy THANKSGIVING TO YOU TOO!! & TO EVERYONE OUT THERE!! It really is a time to reflect and be thankful for all that you are blessed with and to look to others in need of help and pitch in where you can! Our family is purchasing a bunch of TOYS for the Toys for Tots program and also Paytons Pals is working to help out with an sma childs Christmas with a POWER CHAIR!!! I will update as the details unfold but we are VERY EXCITED ABOUT THIS!! We have announced that the next benefit will be in 2007 but we are doing an SMA WALK, ROLL & RUN in 2006 (Spring) at Stoneman Douglas Highschool where we will be raising funds for *PROJECT SUPERBIKE* (a program we started to help purchase power wheelchairs for kids that can't get them. Disabled people (especially disabled children) can't fight for themselves and in some cases can't even speak for themselves. We are trying to help change the fact that they would even need to. The money is there-the need is there. It is time we start getting involved and making sure that the money WE PAY goes to where it is intended and not to these greedy slimy disgusting opportunistic lowlife scum of the earth that take advantage of the worst of situations and laugh all the way to the bank.. I KNOW- I AM SO DRAMATIC-BUT IT IS SOOO TRUE. & I am sick and tired of watching it go on without doing my part-soo to start we are going to help the kids that aren't getting any of that 14 Billion in Medicaid money each year and when people ask why we need to when those medical necessities should be paid for--WE WILL TELL THEM. Because those needs and many others are NOT paid for. BUT, the money is there and it is getting to somebody--JUST WHO IS GETTING IT ALL I WONDER?? I Bet you would be disgusted and amazed to see what really goes on--We are very happy to get involved and DO SOMETHING about all this injustice. I feel that while there will always be injustice in the world, it is just UNACCEPTABLE that in THIS country we barely take care of our sick and disabled and the money that we DO take care of them with, is poorly monitored and managed and because disabled people CANNOT get together and fight for themselves (for the very reasons we help them in the first place!) they just suffer-and many times just suffer and DIE. I would like to think that people just don't know and therefore haven't gotten involved. TO think that they might not even care, is just not something I can accept. Not when i see good people, doing good deeds EVERY DAY. It just must be lack of knowledge and a plan to get to where we need to be--Please join us in helping those that can't help themselves. Many days i think about how i have four limbs-all of which work, I can see, I can hear, I can eat , I can walk, talk , run , work, smile, laugh... What on EARTH do I have to complain about?!!! Those that are less fortunate (physically and mentally-NOT FINANCIALLY!!) should be our biggest concern-especially in times of natural disaster, like the hurricanes, etc.. LOTS To think about -but easy to help fix. LOVE TO YOU AND YOURS.

Name: MJ
Email: TWEETYROL88@aol.com
Date: December 02, 2005
Time: 07:01 PM

Comments

Hello again, I wanted to wish you and your family (a bit early) very happy and healthy holiday season. I'll be back again very soon! Happy, warm hugs coming your way! <img src="http://www.mjthesmaqueen.com/SantaBearHappyHolidays6555.gif"> MJ http://www.our-sma-angels.com/Margaret

Name: Debbie
Email:
Date: December 06, 2005
Time: 11:43 AM

Comments

HAPPY HOLIDAYS TO YOU TOO MJ AND TO ALL OF YOU OUT THERE! THE HOLIDAYS ARE A GREAT TIME TO ENJOY FAMILY AND TO TAKE TIME TO SPEND WITH THOSE THAT WE LOVE!!! JEN & JESSE-your engagement party was amazing and I want to wish you tons of congrats and luck with your marriage and the baby too!! CONGRATULATIONS! Finals are next week so I have been a bit maxed out but we have really been enjoying the holiday time and setting up decorations and the tree etc.. I absolutely LOVE XMAS time-Payton can't wait for the week of Christmas and we are also getting him prepped for Disney-I hope all of you have an amazing Holiday and get to spend time with your family!! XOXO

Name: Robin
Email: robineggs407@yahoo.com
Date: December 08, 2005
Time: 03:13 PM

Comments

Hey there Mrs. Drama Queen. Tried 2 call u over da weekened but you didn't answer. OH well. I love plan power chair!!!!!!!!! Did he get yet! Over winter break I was thinking of doing a project with paytons pals and pennies for payton. Hes gotten so big. so cute. Any ways if you do get a chance holla at me. P.S. Happy late thanksgiving. I just got back from disney on friday night, they're building a new ride. Its a roller coaster that spins upside down in animal kingdom. Call or email me when you can.

Name: MJ
Email: TWEETYROL88@aol.com
Date: December 10, 2005
Time: 01:03 AM

Comments

Hello! I thought I would share this beautiful website with you and your family. <a href="http://www.wisehearts.com/CmsMF.htm">Merry Christmas to My Friend!</a> Wishing you and yours a wonderful week! <img src="http://www.mjthesmaqueen.com/schlittencujo.gif"> MJ http://www.caringbridge.com/ny/mjpurk

Name: Deb
Email:
Date: December 12, 2005
Time: 10:32 PM

Comments

HI ROBIN!! Sorry my phone wasn't charged for a couple days! We Must get together-maybe next week when school/finals are done-Love you, Deb xoxo PS. Payton is doing great and loves his NEW PLAY-DOUGH(sp?) Absolutely loves it! I took him to the BIG park a couple times this week and he loves when I roller blade and wheel him around the track because he gets to go pretty fast-LOVED IT!!

Name: poker 316
Email: test@t248test.com
Date: December 14, 2005
Time: 09:21 PM

Comments

poker http://www.online.poker.com poker 248

Name: Danielle
Email: szwerling@myacc.net
Date: December 16, 2005
Time: 08:42 PM

Comments

Hey! Debbie I just wanted to let you know that i read the stories and i really feel for you and your family. I hope Payton gets better. Good Luck!

Name: Danielle
Email: szwerling@myacc.net
Date: December 16, 2005
Time: 08:43 PM

Comments

Hey! Debbie I just wanted to let you know that i read the stories and i really feel for you and your family. I hope Payton gets better. Good Luck!

Name: MJ
Email: Purk
Date: December 17, 2005
Time: 05:09 PM

Comments

Happy Holidays to you! Candles are a gift of light, A tiny sun, a bit of star. No other dancer in the night Dances with such sheer delight, Little souls serene and bright, Each a glimpse of what we are Shining innocent and pure. ~Author Unknown~ Since I didn't have enough cards to send one to each of you, check out <a href="http://www.mjthesmaqueen.com/indexgreeting">Your Holiday Card from MJ</a> <img src="http://www.mjthesmaqueen.com/MerryChristmasHappyNewYear-2.gif"> Hugs, MJ http://www.mjthesmaqueen.com/

Name: Debbie
Email:
Date: December 20, 2005
Time: 12:02 PM

Comments

HI OUT THERE. I want to wish everyone a very HAPPY HOLIDAY!! We are SO EXCITED to be having our first Christmas in our new home-We love it here and so does Payton! I want to share condolences to those that have lost a loved one this year. With time, there is loss. No getting around it as much as I hate it. It has been over three years since my best friend of 20 years passed away-I miss you Leah and so do so many others. You were such an amazing person and I STILL think about how cool you were and how you never cared what anybody thought-LOVED that about you-& still do-I hope that we will meet again when my time is up-- I got diagnosed with skin cancer last week-basal cell carcinoma-So, I was happy not to have melanoma but not happy to have skin cancer so I had them cut it out (moh's surgery) right away and I am now in the healing process (3-6 weeks). I hope it doesn't come back. (right on my nose where a nose ring would go) I got a B in Microbiology and an A in the lab (should have had an A in the class but super close is not good enough and I was just not ready for the test after Hurricane Wilma -teacher could have cared less) I am done with pre-req's for the nursing program but am waiting for BCC to start taking applications again-it has been over a year and they are talking about Jan 2007-doesn't seem right or fair but I am looking into other institutions now-just in case--We went to Jacob Rappoports Walk, Run & Roll last sunday and had a BLAST! Everyone MUST try to go next year ESP> if you have kids!! It is just SO PERFECT for children and the Auction items were great too!!!! Happy Birthday to RANI HARTWELL!!!! WE LOVE YOU!!! & Chase too!! I am working now on the Spring Walk in 2006 so I will post info as I get it-I am FINALLY getting out THANK YOU CARDS from the benefit in 2005-Please be patient as I have FINALLY found some oh so precious Time to get these things printed and cut and labeled and stamped and sent! I will be so relieved when they are all out -this has taken me forever with catching up with school and the Hurricane , work etc.. We are also planning Paytons Disney trip 2006-Payton is SOOO EXCITED!! I have been taking him to the big park lately and he LOVES IT! He just loves going fast in the wheel chair-We also took him shopping all day yesterday and he had a ball-he picked out Christmas gifts for Grandma and for mommy and daddy too-HAPPY BIRTHDAY GRANDMA ROZ!!!! Ihope you enjoyed your surprise! Rob and Ryan were so excited to surprise you and I just knew that would be something you would really really love!! Wish i could have been there to see your face! XOXOXOXO Merry Christmas Happy Hanakah Happy Holidays to all!! With love and hugs from all of us Freemans!! Rob Deb Payton Grunt Trinity & Dash (our 7 month 70 pound PUPPY!)

Name: Reese Withey
Email: Ryjam282@bellsouth.net
Date: December 21, 2005
Time: 10:26 AM

Comments

Just wanted to say hello and Happy Birthday to Grandma (G-ma)Roz. Wish I could have been there too. Can't wait to see you cousin Payton on Christmas. Love you all.

Name: MJ
Email: TWEETYROL88@aol.com
Date: December 25, 2005
Time: 10:55 PM

Comments

Hope you guys had a great Christmas! Love you guys! Any pics from this weekend? MJ

Name: Jennifer
Email: JENNIFER@DTRTINSURANCE.COM
Date: December 29, 2005
Time: 02:53 PM

Comments

Hey Debbie! Just wanted to say that Jesse and I hope you all had a wonderful Christmas. Ours was great! I am so sorry to hear about the skin cancer. I hope it does not come back. Hope to see/talk to you soon!

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