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Posted Nov 2, 2008 1:42 AM
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Our precious 4 month old granddaughter was diagnosed with SMA 1, the most severe form of SMA at 6wks of age. She was given at year at most. She cannot move her legs or head and is struggling to breathe. She needs to be suctioned many times a day. She has trouble swallowing formula. All we can do is try to make what time she has as comfortable and painless as possible.
We recently had a ray of hope, hearing that a company doing stem cell research was hoping to get FDA approval early next year to start clinical trials for a possible cure. We fear it might be too late for her, but at least it was someting to hope for; Only to fiind out that they are not as far along as originally thought and things are being pushed back.
With better funding and additional research, this cure could come sooner, so many baby's lives depend on it. A high percentage of these SMA 1 babies die by 9 months of age, TIME IS OF THE ESSENCE. This treatment will also cure ALS and diabetes as well as innumerable other illnesses.
PLEASE HELP.
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Posted Sep 17, 2008 5:07 PM
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Love the project. Make it happen AMEX
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Posted Sep 9, 2008 12:01 AM
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Measuring your 2-year-old for a wheelchair because he has SMA is emotionally wrenching for any parent, but knowing we can't do anything to protect him from progressive muscle wasting & weakening is terrifying and sheer torture. With investment & funding into research, SMA can be a thing of the past--like polio. We already know from leading researchers at NIH that a cure or treatments for SMA are within reach and can benefit so many others as well. These kids are the sweetest, happiest & least deserving of us all to have to suffer the fate of SMA. We can change this. AMEX can help change this. Please choose to fund CURE SMA: for their future and for others as well. We can all benefit. Thank you.
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Posted Sep 8, 2008 9:35 PM
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I wish American Express would fund this project as I would like it if no other parent would ever have to hear the words...your child has SMA. Most kids end up with breathing difficulties and rely on feeding tubes for nutrition. This is for a lifetime, not just until their body matures or until some medication works. Not only that but most never sit, never walk, never even lift their hand to their mouths to blow a kiss. What they do though is penetrate your soul with their sincere eyes, deep smile, gentle touch and true personalities. Please, please give this project a chance.
An SMA Mom
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Posted Sep 8, 2008 2:04 AM
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Thank you everybody for reading and caring about SMA (Spinal Muscular Atrophy) - a terrible terrible childhood disease that you won't know about or hear often until your previous little one received the diagnosis from your doctor. The verdict is that you and your spouse happen to be the carrier (1 in 40 people are carriers) so your lovely child will never sit up, crawl or stand up depite the baby is so smart and gives you his/her biggest smile and unconditional love. The doctor will not be able to tell you how much longer your baby will survive and they cannot do anything about it because there is still no treatment/cure.
On the other hand, NIH concludes SMA is one of the 40 neuromuscular diseases that will likely to have a treatment within a couple of years. But we need proper funding to reach that final goal so many many SMA children worldwide can be saved. The funding will also help to find treatment for other diseases like Lou Gehrig's Disease, Muscular Dystrophy and etc). Please consider and vote for this project. SMA baby needs your help and your awareness!
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Posted Sep 8, 2008 12:36 AM
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At 9 months, my son was crawling and pulling up to stand -- hitting all the milestones right on target. At 12 months, he was standing just like almost every other kid his age. Then, he stopped standing. Something was happening, but we had no idea. At 20 months, we heard of SMA for the first time. We were at the pediatric neurology clinic and our little boy had just been diagnosed with the disease. The only thing certain about his future (except for always being loved beyond measure) is that he will never run, or walk, or stand. He will continue to get weaker and may not live into adulthood. But, we can change that. An effective treatment and even a cure is within reach. We can get there if only the research can be funded. Clinical trials could start as early as next year on a possible cure. Please, please choose the Cure SMA project. Thank you.
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Posted Sep 8, 2008 12:00 AM
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Please choose CURE SMA. American Express has the opportunity to change so many lives. Leading researchers state that treatments/cure are within reach; parents will not have to hear the crushing news that their child will soon die, or never walk. It's heartbreaking to see these little ones, with minds so sharp & loving, slipping away day by day. Invest in these most vulnerable people and not just those with SMA but others with various diseases like Alzheimer's, and Lou Gehrig's disease will also benefit. We're so close. AMEX can truly make a difference. Treatments are within reach with AMEX's help.
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Posted Sep 5, 2008 2:13 PM
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My son was diagnosed with SMA Type III at the age of 14. I count my blessings he was able to do everything other kids were able to do, but that has been taken away from him. His question to me the other night...who is going to want to marry and have kids with me mom? Please help find a cure. There are too many broken hearts out there.
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Posted Sep 4, 2008 5:20 PM
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There is not one day that I don't think about how happy and free my baby would be without SMA. He is 18 months old, not sitting up and crawling, and will never be if we cannot find a cure for SMA. Later down the road, he will need machine to help him to breath. All we pray for is he will survive long enough for the treatment to be found. Please pick this project and help us to to find a cure for SMA and other 40 neuromuscular diseases (ALS, Muscular Dystrophy and etc.) With all the new scientific advanement, this area remains a mystry to the doctors and the affected children and families suffer. Please help to combat this #1 genetic baby killer.
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Posted Aug 30, 2008 1:21 PM
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My beautiful sweet granddaughter was taken from us at 10 months. Her wonderful smile faded from her face as the SMA ravaged her body. Please help us find a cure so that no one else has to lose their child to this disease.
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Posted Aug 30, 2008 12:58 PM
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Seeing my child struggle each and everyday with SMA is really difficult. Seeing other children tease him and watching other parents stare is even harder.
Please help us find a cure. Each and everyone of us has participated in fundraising efforts and we need more help. Please consider our project. It will have such a far reaching impact if we can be the next disease with a cure and treatment. Please make it happen. No more children should have to die from SMA.
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Posted Aug 30, 2008 7:26 AM
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no one knows how much inner strength one must have to survive when presented with the challange of SMA. My nephew Doug his wife Michele their sons Greyson who has SMA and Gabrielle who is so supportive of his brother. It's important to be exposed to this disease otherwise one would never know of it. Before Greyson was born I had never heard of it. Please don't give up. Search for the cure.
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Posted Aug 28, 2008 5:43 PM
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PLEASE HELP!!
We just found out our 4 month old has SMA I or II.
Don't know what to do or say. Complete SHOCK!!!!!
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Posted Aug 28, 2008 1:02 PM
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This is such an important issue that needs our time and dedication so that we can find a cure! We do this in honor of Emily.
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Posted Aug 27, 2008 10:23 PM
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In honor of our son Will who passed away 8 long years ago. I will always love you and miss you every moment.
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