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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