Date:
06 Jun 1999
Time:
23:45:19
 

Comments

I am just testing out the new guestbook. It's just been in place since June 8, 1999, so please enter away and give me ideas, suggestions, and thoughts! Laura Stants

Date:
07 Jun 1999
Time:
09:38:39

Comments

Laura, what a wonderful idea to put a guest book on the front page of "Our SMA Angels". My name is Mildred Harris, I am Amanda's Nana, and I just wanted to tell you that I think you are a wonderful person for setting up this site where Mothers with SMA Angels can post their sites and can come to read about other children. Oh, we would have given anything to have had something like this when Amanda was here and so bad and we all felt so lost and alone. Now these Mothers at least know they are not alone and can come here for advice and just to vent if the need be. I know you are very busy with your precious little Devon but it is so great that you still find time to help others and give of your time like you do. Hope all is well with you and with Devon. You are doing a wonderful job. Thanks so much for your part in helping all "Our SMA Angels".

Date:
07 Jun 1999
Time:
16:03:33

Comments

Great Job!!! Keep up all the wonderful work! Love Joanne

Date:
07 Jun 1999
Time:
22:46:18
 

Comments

Laura,

This is a great idea having this guestbook and it is a great and wonderful idea of having this website. You have done an absolutely WONDERFUL job with it. You are a wonderful person and have become a good friend of mine. A friendship that has formed as a result of this website of angels. These children are so special and they truly angels in my heart. My godson has taught me so many things about life and happiness and what's really important. He is only a small boy, but his heart is of gold and he touches mine every single day. I am so blessed to have in my life. His mom, Dori, did his webpage which is found on this site. She did a terrific job and I absolutely love it. Especially the pictures. This is the real Cole...the big eyed, curly haired honey boy.

Thanks for everything Laura! You too have done a wonderful thing with Devon's webpage. It was an "awakening" for me to read your "thoughts" page. It is very special and personal, but so real to so many of us.

My Best,

Patty Kloster, Cole Kaycee Fiedler's Godmother

Date:
15 Jun 1999
Time:
21:41:04

Comments

Dear Laura & Devon and Family,

I felt that this was the best way to tell you that I'm thinking about you and hoping and praying that Devon is doing okay. I was so sad to hear that he had to be hospitalized and had pneumonia. It is so scary....

Lots of Love and Well Wishes, Patty Kloster

Date:
21 Jun 1999
Time:
19:20:18

Comments

THIS IS FOR MARISSA ROSE: I THINK OF YOU EVERY DAY AND I MISS YOU SO MUCH. I MISS YOUR CHUBBY CHEEKS, AND THE WAY YOU WOULD CUDDLE ON MY CHEST. I LOVE YOU SWEETHEART!!!!!!!!!!!

LOVE, AUNT DOREEN

Date:
05 Jul 1999
Time:
18:06:48

Comments

Laura, I love your web pages and what you have done for all are babies you are a very special person you have helped so many people with this site thank you and god bless. Love Sandy mommy to Marissa Rose Green

Date:
22 Jul 1999
Time:
20:49:28

Comments

Hi, I was just wondering if anyone has heard anything from Michelle Irvine. She was due to have her baby girl the first part of June and I haven't seen any news. It worries me.

Has anyone heard anything?...?

Thanks, Patty Kloster (pmtdklos@northpro.net)

Date:
04 Aug 1999
Time:
20:29:50

Comments

What a beautiful site. I lost my son to SMA Type I in April. Like all the children here he was the most precious being in my life. As a tribute to him and his battle my wife na I have built a site at www.wkswithsma.com. This site tells of his struggle and hopefully will help parents make their child's life a little more comfortable. Please visit and let us know what you think. Steve

Date:
18 Aug 1999
Time:
12:45:49

Comments

I came to see Brooke Binning. My name is April Booker. I am Brooke's Mom's first cousin. Brooke is so precious and we love her very much. I am impressed with this web site. It is very nice to be able to read updates on so many special children.

Date:
14 Sep 1999
Time:
06:11:35

Comments

Hi I love the site. Thanks for always listening and for being here. hugs Peg Bailey email: Sheggy@connections.ultranet.com

Date:
26 Sep 1999
Time:
13:33:59

Comments

I think this site is great for parents. I too have lost two very special angels in my life. The first was my son that had a tumor growing in his spine. He died on Dec. 10, 1979 at 14 months of age. To this day I still miss him. My other was my daughter. She was born with Down's syndrome. At the age of 2 she caught meningitis and lost her hearing. At the age of 14 she was at the day care providers and went to swing on a wooden swing set. The swing was not secured and the 2X4 gave way and hit her head. She died instantly without pain. I miss Jimmy and Teresa each and everyday but the passing of time has helped some. I will always remember and keep them safe in my heart. Michelle Justice was my great niece and she is in great company in heaven. Thank you. Donna M. (P.S. forgive the spelling)

Date:
29 Sep 1999
Time:
22:22:23

Comments

This is one of the most informative lessons I have had in along time. I have shared all of your information with our prayer group at church so you will have a few more prayers added to your list from now on. i also sent this address to as many of my friends as I could encouraging them to join in the prayers. With God's help all things are possible. May he continue to hold each and every one of you in his loving arms.

Jan

Name:
karen montreal
Email:
kmontreal@kesslercompanies.com
Date:
06 Oct 1999
Time:
11:10:37

Comments

Laura, Congratulations on your award! I can think of no one better to receive it as you do so very much for so many people. You are very much appreciated and needed and your tributes are beautiful to these angels. Karen

Name:
Alison Brewer
Email:
thewife73@hotmail.com
Date:
05 Nov 1999
Time:
15:33:21

Comments

I think this is very lovely. I had no idea anything like this existed. It was a real eye-opener. You all are very strong and should be commended!

Name:
Patty Squires
Email:
Pattysq@AOL.com
Date:
07 Nov 1999
Time:
19:55:01

Comments

This is the prettiest web site ever! You've done a great job and I look forward to checking in on it for updates. One question: what is Sma?

Name:
tracey
Email:
boilie@lineone.net
Date:
08 Nov 1999
Time:
14:53:54

Comments

words fail me, i am a student nurse who new nothing i met a child with sma and decided to find out what is was, i now feel i know a small amount with the help of this web site.

Name:
Rhonda Manuel
Email:
JMa8074055@aol.com
Date:
09 Nov 1999
Time:
22:15:21

Comments

Laura, Thanks for all the wonderful things you do for our angels! Take care of yourself. Rhonda and J.D. (SMA I - vent) Remember to keep your Faith!

Name:
Peg Bailey
Email:
Sheggy@connections.ultranet.com
Date:
18 Nov 1999
Time:
07:44:27

Comments

Dear Laura, Thank you for all that you do. Today is Taylor's birthday. I miss her immensely. Hope all is well with you. Peg

Name:
talia
Email:
betstaljor@earthlink.com
Date:
21 Nov 1999
Time:
19:52:07

Comments

my prayers are with you. God bless.

Name:
MINNI43
Email:
MINNI43@AOL.COM
Date:
04 Dec 1999
Time:
00:12:35

Comments

THIS IS REALLY GOOD IT MADE ME CRY IT IS SO SWEET I REALLY LIKE IT KEEP UP THE GREAT WORK U GUYS R DOING LOVE, MINNI43

Name:
Kim Vaugahan
Email:
momvaughan@hotmail.com
Date:
07 Jan 2000
Time:
15:28:12

Comments

My daughter Amanda Leigh Vaughan lost her battle to Werding-Hoffman spinal muscular atrophy Feb.12, 1991 She was born December 24, 1977. Mandy was the light of my life and my best friend. She was a hero and a friend to many people. Mandy truly is my perfect angel.

Name:
Thile & David Kreider
Email:
dkreider@paonline.com
Date:
08 Jan 2000
Time:
21:05:22

Comments

Dear Laura- Beautifully done! It is very informative. We are praying for you and Steve....

Love, Thile & David

Name:
Peg Bailey
Email:
Sheggy@yahoo.com
Date:
08 Jan 2000
Time:
22:20:35

Comments

Dear Laura, I cant thank you enough for all you do. The web site is absolutely fantastic. Thanks for making this a place to honor our loved ones. The music is such a nice touch. Hugs Taylor's best bud, Peg

Name:
Libby Poulin
Email:
libby@rffce.com
Date:
12 Jan 2000
Time:
15:37:23

Comments

My daughter, Alyssa, has SMA Type II. She will be 2 years old next month.

I found out in July that Alyssa had SMA and I haven't been to a support group yet. I did join FSMA and receive their information. If there is anyone out there who would like to talk, I'm here. Parents with "normal" children just don't understand.

Libby Poulin Mother of Alyssa Emily Poulin

Name:
mia
Email:
maria.karlskoga@spray.se
Date:
13 Jan 2000
Time:
08:24:56

Comments

I am so sorry for all of you...

Name:
T. Flores
Email:
tflores@bwoodtx.com
Date:
15 Jan 2000
Time:
01:26:24

Comments

We have just recently heard of SMA and I wanted to know more about it. My niece and nephew have both been diagnosed with it and I needed to know more about it.God bless you and all the other families of children with SMA and thank you for sharing your stories with us.

Name:
Patti Morrison
Email:
pwmpmm@aol.com
Date:
16 Jan 2000
Time:
02:30:43

Comments

I think this is a wonderful website and a great support for the families of these Angels. I don't have first hand experience with this but I do have a 11 year old nephew named Austin Morrison who has MD. He is a wonderful child with a great sense of humor. We always enjoy spending time with him. He never complains and is often the life of the party. He lifts our spirits with out even trying. I also have a newborn cousin who has been diagnosed with the worst case of Werdnig-Hoffman Paralysis. She has opened her eyes and enjoys hearing her daddy sing but her condition is grave. We are very concerned about her and her family but I do know that there faith in God will help them through this. Thank you for this opportunity to share with you and I will keep all of these children and their loved ones in my prayers. God bless all of you.

Name:
Stacy
Email:
schomburger@wgvhq.com    m
Date:
18 Jan 2000
Time:
14:35:39

Comments

I think this website is wonderful and informative. Watching my best friend deal with this horrific situation has been saddening and surreal. But, knowing Kourtney Schmidt and watching her laugh and coo has been an experience I will never forget. She was and still is a beautiful little angel that loved her family---All of us---and she has made so many people realize how great and rewarding life can be. I, too, have the utmost respect and love for my beautiful friend, Brandi, who is one of the most kind-hearted, loving and strongest individuals I know. My prayers are with all families who struggle with this tremendous burden.

Name:
kim gleason
Email:
kimg@davisandcannon.net
Date:
18 Jan 2000
Time:
16:10:10

Comments

What a great idea! You all should be commended for all your efforts in creating this website. The loss of a child must be a terrible feeling which I hope I never have to endure. You should take comfort in knowing you are all big angels for surviving the deaths of your SMA angels. May God give you strength and heal your broken hearts. One teardrop represents one wonderful memory of one angel! Can you imagine how many wonderful memories are remembered when we cry many tears, or when we have rain from Heaven!

Name:
Robert B. Elliott
Email:
elliottrb@att.net
Date:
19 Jan 2000
Time:
11:45:33

Comments

The site looks great and its purpose is awesome.

Name:
robin streit
Email:
rockanrobbin@aol.com
Date:
19 Jan 2000
Time:
16:51:12

Comments

With crazy, busy days and life how it is, it is so difficult at times to get to the internet. Many times when you take the time you are disappointed by most of the crap that is out there. This is truly the most beautiful site I've seen! May it comfort many and enlighten others. Everyone needs angels looking after them. I feel happy for the loved ones who are guarded by these beautiful angels

Name:
Lori Nance Parrish    (birth name Laurene Glee Nance, Lori is a nickname
Email:
lparrish@shadow.net
Date:
19 Jan 2000
Time:
22:02:54

Comments

Hi and thank you Laura. I'm little Kourtney Nicole Schmidt's Nonnie.

Name:
Kim Cardone
Email:
SailSugare@aol.com
Date:
21 Jan 2000
Time:
18:44:56

Comments

Kourtney Nicole Schmidt will always be in my thoughts. Brandi, Kevin, and Kasey - I love you guys!

Name:
Colleen Grams
Email:
SCGRAMS@USWEST.NET
Date:
22 Jan 2000
Time:
13:20:44

Comments

What a wonderful website! Oliver Huston is my nephew and he is as beautiful as the pictures. God Bless!!

Name:
Kim Boudah
Email:
Date:
23 Jan 2000
Time:
09:20:09

Comments

I wanted to tell you how much I love your site and how very informative it is about Sma. We also wanted to say Happy Birthday to the angel we know - Happy Birthday Casey !! Tom and Tommy will see you all today , but I have to work ,so i wanted you to know i was thinking about you on your special day !! I can hardly believe it's been three years !!Hope to see you soon! Keep up the great work Sue !- Love from Kim, Tom and Tommy

Name:
Kelli Flores
Email:
KRF87@cs.com
Date:
23 Jan 2000
Time:
12:55:37

Comments

I am here in behalf of my cousin Aaron Schindler, who is fighting the battle of SMA type 2. Aaron is 19 years old and is currently admitted to a local hospital where he is taking treatments to rid his lungs of pneumonia. Aaron is actually doing pretty good, and the doctors believe he will be able to go home in a few days, and they don't see this as life threatening because of the quick and loving care that his family has given him. Aaron is enrolled at a local community college and is an established graphics artist with some ties with people that used to work for Disney. He is a wonderful young man with a smile on his face all the time, he is very easy to get along and so far has the staff at the hospital wrapped around his little finger. They adore him there and he has made many friends, which I believe it helping him to fight the pneumonia off. Anyone interested in knowing how Aaron is doing can contact me or if you would like more information I can arrange for his mom or Aaron himself to chat with you. Please do feel free to email: KRF87@cs.com (my home email) May God Bless all these wonderful little angels that have come into our lives and those that have gone back to the Father to watch over us today. I know I am Thankful to God that he has graced me with Aaron, for my life has been filled with joy and love that he brings.

Love Kelli

Name:
Jeanne Yon
Email:
jfyon@bellsouth.net
Date:
23 Jan 2000
Time:
19:05:42

Comments

What a wonderful memorial to these little angels.

Name:
Robert Harrison
Email:
ebonysun@bellsouth.net
Date:
25 Jan 2000
Time:
22:00:32

Comments

To Lori, and family, I'm sorry to hear about your loss. My prayers are with all of you. I'm positive Kourtney is in a better place looking down on all of us and smiling, as she watches over the family.

My Love, Rob

Name:
Fran Agin
Email:
Magin@uswest.net
Date:
27 Jan 2000
Time:
21:10:25

Comments

Angels come down to teach and touch us Some for a moment, some for a life time.

God Bless

Name:
Angela Egan
Email:
londonlady@home.com
Date:
27 Jan 2000
Time:
23:26:42

Comments

This website is so heartbreaking yet so special

Name:
Robert Cooley
Email:
JoeNavy914@aol.com
Date:
29 Jan 2000
Time:
18:09:50

Comments

My son is now 4 yrs old. It is just him and I living in a 3 bedroom house on a military base outside of Los Angeles. He is such a joy to take care of. I love when I get off work, hop in my car, and head over to the daycare provider's house to pick him up. I just walk in to her house because it is her policy for the parents to have that priveledge when their children are being sitted by her. I always seem to catch him by surprise as his eyes light up and he shouts what I should consider my second name "DADDY!" Boy, what that can do to a person. It makes me so happy to know my son loves me as much as he does. Marcus (my son) has filled a crater of lonliness in my life. If ever I am sad or down, I just think of him and know matter how bad things are there is room for a smile on my face. So often he makes me laugh, at 4 years old he is starting to figure life out. He says the cutest things, he always a legitament 4 yo excuse why I should let him sleep in Daddy's bed, which I give into about 1/2 the time. I asked him one day "Marcus, what is Daddy going to do when I find a Girlfriend (who knows when that will be), and she wants to sleep next to me?" His response came with a twisted smile and a shrug of his shoulders as his hands were raised above his head: "Daddy, you don't need a girlfriend!" I just laughed, but you know, he has completed my life so well that he is actually right, I don't NEED one, want?.......well anyway. He is a video game king, this kid can figure these high tech adventures controlled by him out like it is nothing. Sometimes I will play with him, and he will get annoyed at me and take the controller away as I am "doing it wrong", another smile from me to him. I am a very proud father. He is getting at that age, he is really starting to put two and two together and add up what is wrong with him. He asked me on the way home from work the other day when he was going to walk. I did not know how to answer that, and I couldn't smile, as a matter of fact it took alot of emotional control to keep from crying. But he deserved his answer, so I held his little hand, squeezed, and tried to find his little blue eyes (had to be careful, I was driving) and told him that it would be very difficult for him to ever walk because he is special, and not exactly like all the other kids. He just said: "OWE", and his eyes stared ahead at what I am sure was something that only he could see. Marcus is so special, he is so caring, he is so smart, he has came into my life, and others to make it complete. Marcus is Daddy's little Angel.

I have been introduced to this webpage by Erinne's Mom, and visited for the first time today. I will visit it frequently and cry I am sure, like I have been for the past 45 minutes. I guess you could say I can relate to the stories, Marcus was diagnosed with Congenital Muscular Dystrophy when he was 8 months old, and just the other day at the Muscle Disease Clinic I was told he may have SMA. That doesn't really change anything, Marcus is still my son, he is still my buddy, he is still my little Angel.

Thanks to all of you in similar situations for sharing your stories.

Robert Cooley

Name:
Kara
Email:
Sxycaldrm@aol.com
Date:
29 Jan 2000
Time:
19:46:33

Comments

May God bless each and every one of you and give you and your "Precious Angels" strength. This site is truly amazing, thank you for sharing it with me.

Name:
Manda
Email:
Honda16Princess@aol.com
Date:
30 Jan 2000
Time:
18:58:14

Comments

awww~! Rob i know i don't know you well even though we talk sometimes..but you and your son are really something special..along with all the other SMA angels..i really envy you guys..people don't understand how much you guys go through, I may not even understand..you almost have to experience it first hand to understand it...i have looked at this site 4 times today and everytime i look at it i always read something i didn't see the times before and i cry everytime i come to this site :*( it's incredibly sad that things like this are in the world...my prayers are with you, Rob and also your son..and all of the other mentioned children and families in this page.

much love and prayers ~!manda!~

Name:
Kelli Fliores
Email:
KRF87@cs.com
Date:
03 Feb 2000
Time:
23:58:40

Comments

I just wanted to scream out with joy, with the new findings in the SMA research, that they have found a cure that has worked on the research mice. I just pray that soon it the medicine will arrive for our loved ones to use. How the little angels above have been watching over the researchers guiding them the way so that there will be no more victims to SMA. I cannot wait for the day that they can give my cousin Aaron the medicine, though he will not be able to walk at least he will be rid of the disease and it won't progress anymore. Dear Friends, lets continue to pray for this medicine to arrive quickly!!!! Take Care and God Bless!!!!

Name:
Joe DeAngelis
Email:
JOEDE49@c4.com
Date:
04 Feb 2000
Time:
01:16:06

Comments

Excellent web site! Keep up the good work. We all pray that the recent breakthrough will be the "Magic Bullet" of the new millenium.......

Name:
Steve Danglade
Email:
danglades@gacnw.com
Date:
04 Feb 2000
Time:
19:16:52

Comments

God Bless you all.

Thank you for sharing the beauty of these kids. They make the world a more special place.

Name:
Sarah Heywood
Email:
psandboys
Date:
04 Feb 2000
Time:
22:51:42

Comments

You have a beautiful site. My husband and I are acquainted with the parents of Devon and Sidney Stants, and we had the privilege of meeting Devon 5 months before his home going. Our prayers are with you.

Name:
Dr. Susan Cooksey
Email:
susan.green.cooksey@kp.org
Date:
10 Feb 2000
Time:
16:21:32

Comments

Thanks for letting me [and others] share in your family's celebrations and losses. Mt patient and friend Sandy told me about your site. I wish that I had known about it for her, so she could read about your story and find support in your family. Best of wishes and future to you and your family.

Name:
J. Kempf
Email:
Kempf003@tc.umn.edu
Date:
11 Feb 2000
Time:
22:10:30

Comments

I am a registered nurse that works in pediatric homecare. I have been taking care of a boy with Wernig Hoffman disease for the past 2 years. He just celebrated his 5th birthday!

This is a wonderful website and I will use the information when training new nurses to the case. I also plan to inform the parents of this website and to give them the information I found on support for families of children affected by this disease.

God Bless you all!

Name:
Judy Hastings
Email:
Date:
15 Feb 2000
Time:
19:41:50

Comments

What a beautiful site!

Name:
Judy Hastings
Email:
Date:
15 Feb 2000
Time:
19:55:05

Comments

I am thankful there is a website like this for my daughter, Rami, son-in-law, Joe and their little angel, Ilsa. May they feel the warmth of God's hand as he guides and comforts them through each day.

Name:
Connie Jones
Email:
mrjone7406@aol.com
Date:
16 Feb 2000
Time:
08:12:35

Comments

I teach children with this disability. Any news related to treatment or cures are much appreciated. I want to help my students in any way that I can. Sincerely, Connie Jones Wallace A. Smith Elementary Ooltewah, TN 37363

Name:
L Ricca
Email:
Date:
19 Feb 2000
Time:
10:34:14

Comments

The web site is very pretty and a beautiful remembrance of these children and their families. GREAT JOB!

Name:
kayla
Email:
BOO6993@msn.com
Date:
19 Feb 2000
Time:
19:33:05

Comments

i think it is so neat that you have a guest book to go to and sign i think everyone that signs this is thinking about all the little angels everytime i get on the internet i come to this site i really like the one about the little girl named kayla. i feel really good because my name is kayla too. i just think about her and i pray for her family to i just think it is so cool that her name was kayla my whole name is kayla renee plunkett well i better go i love ya and i'm praying for the families who lost there little angels. kayla renee plunkett!!!!!!

Name:
Donna M. Hill
Email:
grumpee@Hiwaay.net
Date:
20 Feb 2000
Time:
23:03:07

Comments

I don't know what it is like to lose a child, but I have lost a parent. It is a hard thing to deal with, but through the help of GOD and family and friends, you can survive. There may not be any words a person can say to take the greif away, but remember, your children and loved ones are in heaven as our ANGELS. I will pray for each one of you, and your family. Remember you always have a friend to turn to.

Name:
Belinda Parker
Email:
bparker@admin4.hsc.uth.tmc.edu
Date:
21 Feb 2000
Time:
10:01:24

Comments

The web site is great for remembering those lost to this disease. It also helps in bringing awareness about the disease.

Name:
June Hendrickx
Email:
jhendrickx@mail.ff.cc.mn.us
Date:
24 Feb 2000
Time:
10:13:37

Comments

They are angels here on earth. I truly hope they find a cure. Someone I know has SMA and he has been in prayers - maybe we will finally have an answer.

Name:
Susan, Jessica & Gary Young
Email:
Date:
26 Feb 2000
Time:
19:01:33

Comments

We came to see the story of Rhiana Gallagher, the daughter of my cousin Danny and his wife, Kim. The story gave us an understanding of the disease. Kim and Danny, God Blessed you with a very beautiful daughter.

Name:
Jennifer
Email:
zwoman006@aol.com
Date:
29 Feb 2000
Time:
22:50:56

Comments

Robert and Marcus: You are quite the pair

As I look at this page my eyes fill with tears and mt heart aches. There are so many special people sharing there lives here. It is amazing to me the braveness i have seen here. To Rob, I admire you and your drive to make your son the center of your life from the moment we met i could tell the dedication you have to your "angel" Marcus is so special and i am glad he has you in his life. I know that times are tough right now but your love and dedication to him will bring you together again. i have faith that you will be there for the long haul. I wish more fathers would be as committed to there children as you are, you are an example for all. I feel the love that you have to share and that will get you through, hold on tight to everything you have and nothing bad can ever see it's way to your life. I pray that you and Marcus will live long, happy, prosperous lives and share many things together. I am very glad I have you both in my life. I think about you often and smile for the admiration you have shown me. Love will conquer all. Best wishes my heart, my thoughts and prayers are with you both.

Name:
Angela
Email:
mondolink@bigpond.com
Date:
01 Mar 2000
Time:
05:28:29

Comments

Hi to all. I think you are all doing a great job. I also have a son David 8 years old who has SMA II. He is doing really well, but will have to have spinal surgery in the near future due to scoliosis progressing very fast. I would like to hear from anyone who has experienced surgery at this young age.

We are all very lucky to have our SMA ANGELS, because that's what they are.

love you all Angela Melbourne, Australia

Name:
Nancy Shade
Email:
gold@iw.net
Date:
02 Mar 2000
Time:
12:22:22

Comments

Great site! I have a 7 year old daughter with SMA.

Name:
AUNT PENNY GOULD
Email:
GOULDPENNY@AOL.COM
Date:
02 Mar 2000
Time:
19:41:16

Comments

MY PRECIOUS LITTLE GREAT-NEPHEW WHO IS JUST UNDER 10 MONTHS OLD HAS SMA TYPE I. OF COURSE IT IS HARD TO DEAL WITH BUT HE IS SUCH A JOY TO HAVE THAT WE ARE COPING AS BEST WE CAN. I AM SURE YOU ALL KNOW OF WHAT I SPEAK. MY PRAYERS GO OUT TO EACH AND EVERY PERSON WHO READS THIS BECAUSE IF YOU DID NOT KNOW WHAT I'M TALKING ABOUT, YOU WOULD NOT BE READING THIS. GOD BLESS.

Name:
Cynthia Scott
Email:
cynthiaascott_2
Date:
08 Mar 2000
Time:
11:13:21

Comments

This site really did touch me. I have a daughter named Cayce Lynn Scott who was diagnosed at 1yr and 3 months with SMA type II. She is doing amazingly well despite a bout with pneumonia in October. Boy, was that scary!! She is currently attending pre-school full day and loves interacting with the teachers and kids at school. I realize after visiting this web site how lucky I am to have Cayce. She may be a victim to this horrible disease, but she has a wonderful part of my life for five years now. I am very hopeful for her future. We were initially told we would be lucky to have her for six weeks, six months, or possibly six years if we were very fortunate. The same doctor who diagnosed her is amazed everytime he sees her. She is a real trooper. She is the older sister to a three year old "SMA-free" baby as well. She plays the part of older sister very well along with terrorizing him with her motorized wheelchair!! Again, I enjoyed visiting the site. Some segments were difficult for me to see. I hate the thought of being in the position that these parents have been through when they ultimately lose their child. My prayers are with them all. Signed, Cyndi Scott

Name:
DIANA LATIMER
Email:
DianaL2717@aol.com
Date:
11 Mar 2000
Time:
22:59:44

Comments

MY BEAUTIFUL GRANDDAUGHTER DIED FROM THIS TERRIBLE DISEASE. SHE LEFT US 2 YEARS AGO. HER MAN WAS KRISTIN LEE. SHE DIED AT 6 MONTHS OF AGE TO SMA TYPE 1. IT HAS TAKEN ME ALL THIS TIME TO GET UP THE STRENGTH TO LOOK AT WEB SITES LIKE THIS ONE. IT IS SO SPECIAL TO SEE WHAT FAMILYS HAVE DONE TO HONOR THEIR BABIES AND CHILDREN. MAYBE WHEN I'M A LITTLE STRONGER I WOULD LIKE TO HAVE A PAGE ALL ABOUT KRISTIN. WE MISS HER SO.

Name:
Kristi Evans
Email:
Bluizz74
Date:
16 Mar 2000
Time:
13:55:17

Comments

I just wanted to let you know that i have realy enjoyed reading this beautiful web site. I never realized that there were so many cases of SMA out there. I am just glad to know that i am not alone. My child was also diagnosed with sma typeI and was given a short life span. But i would like for every one to know that he is doing extremely well and will turn five years old this august. We have had our ups and downs but more ups than the downs. I am really sorry for those of you who have lost a loved one to this horrible disease. And I also have asked the question of why. I have always wondered what i did wrong in life to have a child born only to die before his time. But now i realize that god has chosen those of us who is strong enough to care for one of his children. This is a test that god has chosen to put us through to see if we are strong enough and capable of taking care of his precious gift. I also want everyone to know that these little angels were brought here for a reason. Not to die but to teach everyone a valiable lesson in life. To teach you family values and strength, And the power of living. So continue to be strong and hold on to what you have and you will learn this valuable lesson in life.

God bless you all, Kristi Evans Mother of Christian SMA Type I

Name:
richard harrison
Email:
grzzlyrich@aol.com
Date:
16 Mar 2000
Time:
22:07:38

Comments

this is so sweet but so sad babies always go to heaven and that's good but it is sad to lose a baby i do wish you and all the kids the best and hope for a cure soon

Name:
Ferne Jaffe
Email:
afjaffe@earthlink.net
Date:
20 Mar 2000
Time:
17:52:32

Comments

Thank you for creating a beautiful website for anyone who has to face such a difficult illness. It is a comfort for those of us who have lost a child or grandchild. Also, it is supportive for the families who spend each day taking care of their child. It gives hope to all of us. My grandson, Jonathan Jaffe Burlina would have been one year old today. He was with us a short time but we will have his wonderful memory forever. Sincerly, Ferne Jaffe

Name:
jenn
Email:
pm121597@aol.com
Date:
22 Mar 2000
Time:
19:04:37

Comments

once again i am here re-reading stories and looking at all of the angels here - i come here often - somedays i laugh as i look through and see the cute little pictures - and then there are the times that i cry - thinking of how these sweet little angels left our arms much too soon - looking at their pictures seeing their sweet smiles and those big expressive eyes that seem to look into your very soul - i am so thankful that we have this place thanks to laura for creating it and to all of you for sharing your beautiful angels and their stories with us all - my thoughts and love go to you all always - brit-leigh's mom

Name:
mike drum
Email:
mikedrum@ev1.net
Date:
25 Mar 2000
Time:
02:16:38

Comments

I want to send out my prayers to all these brave children and God bless them all

Name:
Karen
Email:
jhkinternational@yahoo.com
Date:
06 Apr 2000
Time:
04:10:28

Comments

I lost a preemie to SMA nearly two years ago and have been mesmerized by the site and the stories. My heart goes out to all the families of these precious children and to the children as well, who fought with such courage to make it through just one more day. I have never been able to find a single library book about SMA but this website and some of it's links have been incredible. Thank you.

Name:
Stacye Carter
Email:
Stacye_Carter@msn.com
Date:
06 Apr 2000
Time:
23:31:34

Comments

My best friend has two children with SMA. I know from watching these two kids how special and time consuming they can be. Thank you for regconizing these special children.

Name:
Kelly
Email:
iancharles@itrail.freeserve.co.uk
Date:
10 Apr 2000
Time:
18:24:37

Comments

I gave birth to Molly on Tuesday 16th February last year. She was beautiful, lively and full of life. She didint have a loud cry and her legs tremored from 2 days old. I was told by health visitors and doctors this was possibly low blood sugar, and it was left at that. Being a new mum i believed them. In May I noticed a lump on Molly's back, She went in for tests and it was found she had a Kypho-scoliosis. We were also told she has some form of muscular condition. On November Molly underwent further tests and we were told that she had an undiagnosed neuromuscular condition. No one gave us a name for this, they just said she was unique. Molly couldnt crawl, roll and she couldnt move her feet, she lay in a frog like postion,but she tried so hard and she started feeding herself with the bottle, she was so happy all the time and nothing got her down. Her facial features werent affected at all. Physio and splints were helping Molly and every now and then I felt a piece of hope. She made me so proud. In January Molly caught bronchiolitis and needed ventilated. She got over this and the GP said her chest was the clearest he had ever heard it. I was giving Molly suction as required now. Three days later Molly was back in hospital and needed ventilated again. This time the doctors told me it was due to her condition. All this time they couldnt give me a diagnosis. Molly made it off the ventilator for her first birthday. On the 27th of February she died. I still dont know why or what. Reading through some of these pages, I recognise so many symtoms that Molly had. Molly was an angel the day she was born, and she will be an angel forever.

Name:
Jill
Email:
Date:
13 Apr 2000
Time:
14:37:13

Comments

I just wanted to say thank you for this wonderful page. My father lives with this disease making my life growing up frustrating and sometimes scary. To help myself and to enlighten a few others, I have writen a paper for my college english class. I mentioned this website and other students, all who had never heard of the disease, checked it out and were made aware. Thanks agains!

Name:
Jayme McKinley
Email:
jaeann11@hotmail.com
Date:
13 Apr 2000
Time:
15:08:50

Comments

Mother of StephanyJo Ann Noyce 04-30-87 to 11-04-90

I found this site from fsma.org and i would love to have some information about putting my little girl's story on this site.....I wish i had experienced the kind of support everyone has now....i felt so alone for so long.....now i'm at a place in my heart and in my life where i have a need to give encouragement to others ......catharsis for myself......i need to give back what she gave me..... to others. The pain is still so strong at times that looking through all these entries brings uncontrollable tears mixed with memories tucked away for so many years.....i feel her with me always.....but i feel a surge of strength and encouragement from her like never before......her story needs to be told.....her life needs to be celebrated.... I love you baby girl......Always my precious angel!!!

Name:
june mcdonald
Email:
dj.mcdonald@home.com
Date:
17 Apr 2000
Time:
02:27:29

Comments

Beautiful web site. My heart aches for all of these little ones and their parents.

Name:
Brandi Schmidt
Email:
kaos904@aol.com
Date:
17 Apr 2000
Time:
21:51:04

Comments

I was just reading the Guest Book and was so touched to see so many of my friends and family's names and messages. Kevin and I continue to be amazed at how kind all of you have been to us. You confirm our belief that "Special K" was, indeed, a very special angel. Thank you for sharing in our celebration of her life and grief of our loss. And once again, thank you, Laura Stants for your hard work and for helping all of us.

Love, Brandi (mom to Kourtney, SMA1, 2/1/99-12/2/99)

Name:
Jim Irwin
Email:
jei@netusa1.net
Date:
19 Apr 2000
Time:
20:34:19

Comments

Name:
R. Wayne Ammerman
Email:
wayne@glenndale.net
Date:
21 Apr 2000
Time:
16:49:49

Comments

Laura: You have done a wonderful thing creating this web site, it is absolutely beautiful and the music is superb. With every body's prayers, God will provide a cure in (His time) for this dreaded disease. I too miss Devon. May God bless you both.

Name:
Vincent G. Calicchia
Email:
VCalicchia@rpmcc.com
Date:
25 Apr 2000
Time:
11:13:39

Comments

My niece has SMA, so as you can guess, I feel deeply for all the parents who must battle through the pain and heartache of this genetic disorder. I just finished reviewing the research progress and looking at the pictures of the little warriors and my colleagues here at work at staring at me in amazement as I am reduced to tears. Keep up the great work and I intend to support you however I can.

Name:
Cathy Bender
Email:
Date:
27 Apr 2000
Time:
14:43:32

Comments

My thoughts and prayers are with you all...

Name:
Minister Laurentis Barnett
Email:
laurentisb@yahoo.com
Date:
28 Apr 2000
Time:
11:31:22

Comments

It is time that we start standing behind our youth supporting them in sickness and in health even if the are not our own children. In actuality, they are all of our children, why, because the are the leaders, presidents, preachers, teachers, doctors, lawyers, and parents of tomorrow and we must do everything we can to see that they live to see it.

Name:
ELIZABETH LEWIS
Email:
Date:
03 May 2000
Time:
15:28:46

Comments

THIS IS BEAUTIFUL WEBSITE...THANK YOU FOR THE INFORMATION ENCLOSED....LIZ

Name:
Mary K. Staberg
Email:
mkstaberg@webtv.net
Date:
09 May 2000
Time:
20:57:12

Comments

Dear Sammy's family, My heart goes out to you on the loss of your beautiful son. We lost our only grandchild to sma type 1. He was 5 months old, he died on March 27, 1998 at home in Visalia, Ca. We miss him terribly.

Mary

Name:
Chrissie Dearing
Email:
lucydesifan@yahoo.com
Date:
10 May 2000
Time:
09:56:40

Comments

What a beautiful site!

Name:
Michelle A. Morgan
Email:
Michelle_Morgan@doh.state.fl.us
Date:
12 May 2000
Time:
16:21:34

Comments

I am so glad that this web site exists. I work with parents with children who have moderate to terminal diagnosis. I've recently come across a family whose daughter has SMA. It is very hard for em to find information for them. They are looking for a support group in the Orlando area and to date I don't think one exists. I've been calling and emailing all over the place and have not been able to find out much. If there is any way you can help me please email. Thank you so much for your time.

Michelle Morgan Family Resource Specialist for CMS Orlando

Name:
DOROTHY TEUFEL
Email:
DTEUFEL@msn.com
Date:
28 May 2000
Time:
18:56:51

Comments

ITS WONDERFUL TO FIND SUCH SUPPORT FOR THE SURVIVORS OF SMA (THE PARENTS AND LOVE ONES) it BRINGS ME A SMILE WHEN I THINK OF ALL THE PERFECT ANGELS LOOKING OUT FOR EVERYONE. THANKS FOR THE REMINDER

Name:
Fran Reibman, CE
Email:
doghouse@advanix.net
Date:
31 May 2000
Time:
12:46:25

Comments

Love your page. You did a great job!

Name:
MUSTAFA CAY
Email:
mustafa_cay@usa.net
Date:
07 Jun 2000
Time:
18:24:31

Comments

I LIKE VERY MUCH ALL OF YOUR SITES!

WITH REGARDS,
MUSTAFA FROM TURKEY

Name:
Beatrice Hazzard
Email:
pjburns@infoblvd.net
Date:
11 Jul 2000
Time:
22:36:30

Comments

I just found this web site today. I really think its great. I have been needing to hear about other SMA families. I have been feeling like my son Ian was the only one around. Which I think he is in the small town of Hornell, NY USA. No one has even heard of SMA before. Ian has Sma 2. He can walk but falls alot and has a lot of trouble to get to standing position. Respiratory is the biggest problem I have right now. He can scare me at time with his respiratory infections. Oh by the way Ian is 21\2 years old. He's full of happiness and is very argumentive. He is my second child. I have a four year boy named Mitch, he is "SMA-FREE" thank God. I am hanging in here a little better thanks to web sites like this one. I live day by day thinking about my little angle, especially at work everyday. He wants to sleep with me and hardly lets me out of his sight when I pick him up from day care. "I need my mommy" he always says. I try to tell him different but he argues with me. Sorry for going on and on. thanks for this web site.

Name:
Arlene Lucovich
Email:
allucovich
Date:
20 Jul 2000
Time:
13:42:10

Comments

Dear Binning Family, you all in our Prays and Iam going to put you all on the pray list at our church we love you all very much Mrs.Binning I called Donna on my celler phone and Talked to Ashely and she told me how to look on the web about Brooke is a very cute little gril and Please E-Mail me. Love,Arlene here is my E-Mail adderss allucovich@yahoo.com

Name:
Pat Osborne
Email:
posborne@engs.com
Date:
31 Jul 2000
Time:
23:39:07

Comments

This is really a well done and informative site. I pray that God will bless and comfort you all. My great niece, Amanda Harris, is listed here.

Name:
raider
Email:
raider@bettanet.net.au
Date:
01 Aug 2000
Time:
22:16:20

Comments

I am not a parent yet but do hope to be soon, but i do care for a lot of children.

I found that your page was wonderful.

They really are angels.

Thankyou for the experience, it brought tears to my eyes. They were truly beautiful children. The memories are important now.

Name:
Peggy Marsh
Email:
plhmarsh@webtv.net
Date:
03 Aug 2000
Time:
22:41:11

Comments

My grandson Michael Kelley age 3 has SMA type 2. We all are hoping for a cure.

Name:
Linda (Ian's Grandma)(actually Great Aunt)
Email:
lindaburns3@home.com
Date:
14 Aug 2000
Time:
21:56:32

Comments

I think it's a wonderful site for all our little angels. Hope a lot of people read it and understand all the work and hope that these little people need with this disease. I know we are trying very hard to learn more about it.Especially my niece.Sharing with other parents with children like Ian is helping her. Keep up the good work. Thank you, Linda

Name:
angi burns
Email:
angeliqueburns@home.com
Date:
14 Aug 2000
Time:
21:58:11

Comments

my nephew is Ian Paul Lewis! he is the sweetest, happiest little boy. the way he acts you would never believe he is ill!

Name:
Monika
Email:
monika_bar@hotmail.com
Date:
17 Aug 2000
Time:
18:46:38

Comments

Beautiful and informative site. Thank you for your efforts to educate people about this illness.

Name:
Barbara Moczulski
Email:
barb@execulink.com
Date:
27 Aug 2000
Time:
23:02:37

Comments

I came across your web site by accident or not? It is informative and sensitive. I will continue to visit the site and pass the work on.

Name:
Michelle Gagne
Email:
homeimp@ntl.sympatico.ca
Date:
11 Sep 2000
Time:
14:16:20

Comments

I really enjoy your book on s.m.a. You see I had a little girl with s.m.a. Here name was Erica. She was 9 month old when she past away. Its pretty difficult for us, we still think about her all the time.If you feel like talking to me I would really appreciate, or if you know someone who would like to talk to me I've would love that.

Name:
Jennifer Weidner
Email:
Red2965@cs.com
Date:
14 Sep 2000
Time:
12:54:12

Comments

What a beautiful place i know firsthand about SMA my grandson had it he was only 4mos.old when he died on 9/18/98 he was my youngest daughters 1st child he live here with us i helped take care of him everyday of his life i wish i had a computer before this so i could have had more information on this dreaded disease i still have so many unanswered ones to this day so i hope i can find the answers that i need now how do i go about getting a page for my grandson here this is all new to me and i need some help thank you for the time you have spent reading this Jennifer Weidner(Granny)

Name:
Dean Sharpless
Email:
deanos@uplink.net
Date:
20 Sep 2000
Time:
05:15:52

Comments

First I ever heard of the disease. Has any child ever been admitted to one of our 22 Shriners hospitals? Transportation & hospital care is free.

Name:
Tom Jennings
Email:
tomj4_98@yahoo.com
Date:
08 Oct 2000
Time:
03:10:00

Comments

Thank you for the creation of you site. We have 3 children, our son Tyler, the youngest, is 3 years old and has SMA Type 2. Some other good places for parents and relatives to look for help with coping are, the make a wish foundation, the MDA and any number of support organizations, we belong to Families of SMA. We went to the make a wish foundation web site and applied for our son to be able to make a wish. Our wish of course is that someday soon there will be a cure. But till that day, we can only try to make his life better. He asked the nice people from make a wish if he could go to disney land. So we'll all be going there in the summer. He is in his second year of school. He is in a head start program in the public school here. He is very intelligent. Always the center of attention, not the fact that he's in a power wheel chair. But because of how he brightens a room when he comes into it. Let us all be strong. The children are the future. Again.. Thank You for the site. Any of you who want to email me, please feel free. We would be happy to share any information that we have or help point you to other resources. Thanks for reading. Tom & Michelle Jennings

Name:
Emily and Tyson
Email:
ltl_dragon@go.com
Date:
27 Oct 2000
Time:
02:15:35

Comments

You have a very nice website. Even though losing a baby to SMA type 1 has been the most heart breaking thing we have ever been through, we still thank God for blessing us with our beautiful baby boy James Cayden Poole. He lived to be nine days old (March 23, 2000-April 1, 2000). Our hearts go out to all those who have gone through this before, are going through it currently, and those who will in the future. Good luck and lots of love.

Name:
Carolyn DeMoss
Email:
demossj@netcnct.net
Date:
30 Oct 2000
Time:
15:00:21

Comments

A friend has a grandson with this condition and when I asked her what it was, she directed me to this web page. I had no idea, not even a clue that so many precious little ones were braving such odds to survive. Thank you for the information and the touching way you have shared. Carolyn

Name:
Sharon Bryant
Email:
Sharon.Bryant@SSA.GOV
Date:
31 Oct 2000
Time:
18:12:43

Comments

I was truly amazed when my oldest daughter located this website on the computer. I lost my middle daughter, Nicole, a twin to Werdnig Hoffman in June 1999. I am currently getting information together so that Nicole's story may also be added to this website. Thank you for allowing us this opportunity to share the story of "our small angel" with you.

Name:
Pat Davis
Email:
admsgrdn@aol.com
Date:
01 Nov 2000
Time:
23:45:00

Comments

I too am the mother of an SMA angel. I want so much for a cure to be found so that others never need experience the loss of their precious child. I would like to thank you for sharing information about SMA so that others can understand. I would like to invite you to visit my memorial site: Adams Garden. Feel free to stop by!

www.adamsgarden.homestead.com

Name:
G King
Email:
ggk@aol.com
Date:
03 Nov 2000
Time:
20:26:29

Comments

A fitting tribute to all the little angels who have suffered and died from this incurable disease.

Name:
dillon strickland
Email:
sgracie715
Date:
08 Nov 2000
Time:
20:00:03

Comments

hi am dillon i have sma 2 i live in cortland ny i have never walked never will but am happy am in1st grade my mom crys about it but i cry for the kids that dont have the chance to grow up and go to school i blesseveryone of themand pray every night for a cure may be some day it will be answered. love dillon

Name:
Keondra CUNNINGHAM
Email:
kekekunningham.@aol.com
Date:
11 Nov 2000
Time:
22:42:23

Comments

We visited the web site to see Nicole Pruitt. We are friends of hers. We just wanted to let her know that we love her and miss her very much.

Love Always, Keke,Akeem and Molly

Name:
Marc and Ann
Email:
TheMcCartys5@gateway.net
Date:
13 Nov 2000
Time:
13:37:26

Comments

You have a very beautiful site in memory of your precious angel's. Your children have really touched our hearts and souls. Hugs and God Bless...

Name:
Krystal
Email:
kryst04@yahoo.com
Date:
13 Nov 2000
Time:
15:40:34

Comments

This website is a great idea, in the memory of all these little ones.

Name:
emily
Email:
Date:
30 Nov 2000
Time:
19:22:21

Comments

This is a great web-page!

Name:
Email:
Date:
01 Dec 2000
Time:
14:18:51

Comments

The web page is wonderful and so touching. These children are so blessed to have such loving families as the families are also blessed by such special children. I know you will all have jewels in your crowns when you get to heaven!!!

Name:
Laura Marsh
Email:
lmarsh@frontiernet.net
Date:
01 Dec 2000
Time:
15:00:25

Comments

I visited this site to see Conner Riggs. His whole family has been special to me for many years and he's the reason I've learned about SMA. Conner has been a blessing not only to his family but to his whole community. We all care so much for him and for all of the special Angels who are stricken with this horrible disease. I have no doubt that GOD has a special place in heaven and a very special plan for these beautiful children. I'm praying for you all.

Name:
Tara
Email:
millman@attglobal.net
Date:
05 Dec 2000
Time:
17:37:40

Comments

This site is a nice place to to keep the memories alive of loved ones. It has been a year now since my dear friend's angel went to heaven. God bless her, her husband, her whole entire family and may the love and warmth their angel brought them fill their hearts during their sad times.

Name:
Vickie Case
Email:
vicase@hotmail.com
Date:
06 Dec 2000
Time:
20:29:37

Comments

I am here to support my friend Kim Winward and her wonderful darling children nicolas and gidget!

Name:
Joan Bares
Email:
jbares@msubillings.edu
Date:
07 Dec 2000
Time:
22:03:03

Comments

I lost a child in 1981 from Werdnig-Hoffman. He would have been 19 years old this month of Dec. 2000. We both have a common German background with a common ancestral name, Pfau, from Heilbronn Germany. I still talk to him and ask him to watch over and guide his brother and sister, grandparents etc.

from Montana

Name:
Email:
Date:
10 Dec 2000
Time:
18:54:26

Comments

What more can be said of these precious Angels from God? As I sat here and read thru the sites, I thanked God that I was so richly blessed with healthy Grandchildren at this time. These children are a loan from God to people who will find that their time here had richly blessed them in some way. All of God's children are beautiful and when something is wrong with one of them, God cries with us. May God bless each and everyone of you. Remember always that you are only a breath away from your precious *Angel* and they are safe in the arms of God.

Name:
john & dora
Email:
jhajr@cstel.netM
Date:
18 Dec 2000
Time:
21:42:06

Comments

Merry Christmas little Angels

Name:
debra newbold
Email:
dnew35228
Date:
22 Dec 2000
Time:
13:19:03

Comments

may God bless each of you

Name:
Barbara Brooks
Email:
babs4him@hotmail.com
Date:
26 Dec 2000
Time:
11:59:29

Comments

Loved your web page.

Name:
Pam Moon
Email:
pammoon@hotmail.com
Date:
04 Jan 2001
Time:
11:12:50

Comments

I know about your site through a friend of Conner.

Name:
ayreonia
Email:
tommygurl1371402
Date:
09 Jan 2001
Time:
17:19:22

Comments

this is a great web page!!!!!!

Name:
Carol Yawn
Email:
cyawn@bulloch.k12.ga.us
Date:
18 Jan 2001
Time:
16:13:59

Comments

I work with a beautiful lady whose grandson has SMA and she told me about this web page.

Name:
Ashley Hines
Email:
ashleyhines@yahoo.com
Date:
24 Jan 2001
Time:
11:14:04

Comments

What a wonderful way to help so many people with this dreaded disease. Life is so precious, especially the lives of children! Ashley Hines

Name:
Sandy Mijnendonckx
Email:
sandy.mijnendonckx@wol.be
Date:
26 Jan 2001
Time:
12:45:32

Comments

It's a site with a lot love in it and that's wonderful.

Name:
Mary Falzarano, OTR/L
Email:
mary@megadv.com
Date:
03 Feb 2001
Time:
12:03:12

Comments

What a wonderful and helpful site. I'll be back and will share this with the families, educational staff and other therapists who work with our children with SMA.

Name:
Mariann and Peter
Email:
granlunden14@privat.dk
Date:
05 Feb 2001
Time:
15:20:44

Comments

Thank you for this web site. We were searching for information about SMA, when we saw this site. We live in a small village in Denmark (Europe) No one has so far been able to tell much about SMA, that's why we are searching for more.

Today (5. february 2001) our son Andreas is 5 weeks old. Three days ago the doctors gave us the worst chock anyone can ever imagine. Our little son has Werdnig-Hofman's disease, and he will die before he reach the age of two.

None of us knew, that we carried this disease, and we have never heard of it before. If you know anything about where we can look for further information please let us know.

Mariann and Peter

 

Name:
Michaele Aldridge
Email:
michaele@glenndale.net
Date:
08 Feb 2001
Time:
15:38:00

Comments

Just welcoming your new angel girl Kaylee and remembering your angel boys Devon and Sidney. Thank God He puts friends together to share all of life's joys and sorrows. Michaele,Greg, Noah and Grace

Name:
Christopher Webb
Email:
webb_chris84@hotmail.com
Date:
11 Feb 2001
Time:
14:48:48

Comments

Keep up the good work!! May God be with you and them in everything that you all do..

Name:
Laura El-Disi
Email:
L_disi@yahoo.com
Date:
14 Feb 2001
Time:
10:50:29

Comments

I am a friend to someone who just had a baby born with SMA and they are devastated with the news. Not knowing where to turn or what to do I am in search for them. I hope to find some soothing news for them. So far no luck. I am very happy to see this site I am going to send it to them and hope that