This Is Spinal Muscular Atrophy

This Is Spinal Muscular Atrophy

September 23, 2012 Personal 0

I just heard about the SMA Blog Party on the Gwendolyn Strong Foundation website. I read many of the touching stories of families affected by SMA and wanted to write from my own perspective as someone who was born with SMA and is now living with it as an adult. Since Muscular Atrophy primarily affects children, I thought it was important to get my Mom’s insight into what it was like for her and my Dad. Here is what she wrote:

Writing this is bringing back very emotional memories. My pregnancy was normal. No signs of any trouble and the delivery was also normal. We were so happy with our new son. This was our first baby and I was very green at motherhood. My husband kept saying there is something wrong with David. He looked ok to me. Just his legs were relaxed. Looked like an adult would with his legs straight. Took him to our family doctor and he didn’t think anything was wrong. We tried to stop worrying.

When David was around 7 months old the doctor finally sent us to a specialist. They did a biopsy and we were told by the doctor that he had Spinal Muscular Atrophy and he would not live past 2 years. Well we were devastated and stunned. We had no counseling, no followup… nothing. We just drove the many miles home crying all the way.

David is a gift of God as he has impacted the lives of so many people including me. Especially myself, he has made me grow as a person. He has had so many close calls and each time I have held my breath and been in a fog hoping he would pull through. The Doctors told us that pneumonia would probably kill him if he got it. Then we were told he needed to have a spinal operation because his muscles were pulling his spine and causing scoliosis. He needed the operation as it was badly effecting his breathing and the longer we took to decide, the less likely he would survive the operation. That time was so bad but he made it. He is tough but at the same time delicate.

David has a beautiful personality and he has made us very proud of him. I always felt so sad as I know he wanted to do the things the other kids were doing and some of the simpler things are what hurt the most. He has lived well past what the doctors said he would. He is living on his own too and working, doing things that people can’t believe he is doing. SMA is a terrible thing to live with. But with determination you can raise even above that and my son is proof. I love him dearly.

I am very blessed for having such great parents. They never treated me any different than any other child. I went to a regular school, played in the local youth bowling league and went on many camping trips in Boy Scouts in my power wheelchair.

SMA is a degenerative disease and I can no longer do many of the things I used to do as a child. I miss being able to play video games and some of the simpler things like being able to write and feed myself. I try not to think about these things too much because what is done is done. Instead, I look forward to the things I can do and look back fondly on the things I have done.

This was and is me

SMA Statistics

  • SMA is the #1 genetic killer of young children.
  • SMA is estimated to occur in nearly 1 out of every 6,000 births.
  • 1 in every 40 people, or nearly 10 million Americans, UNKNOWINGLY carries the gene responsible for SMA. Few have any known family history.
  • SMA is a pan-ethnic disease and does not discriminate based on race, ethnicity, or gender.
  • There is currently no treatment and no cure, but the National Institutes of Health (NIH) selected SMA as the disease closest to treatment of more than 600 neurological disorders.
  • Researchers estimate that a viable treatment and/or cure is attainable in as little as 5 years – IF provided adequate resources.
  • The American College of Medical Genetics recommends that SMA carrier testing be made available to ALL couples planning a family, regardless of ethnicity or family history.

This is SMA. I’m one of the few lucky ones, but many others are not. I want to eradicate it. Through this website, we strive to raise awareness. Through partnerships with non-profit organizations and other SMA-affected families, we work to raise money for a cure. The Gwendolyn Strong Foundation is one of these organizations, and they currently are in a voting contest for $20K. If they win, the money will go towards fighting SMA.

Here’s how you can help them get there:

PLEASE VOTE: It’s really this simple –>

  • You can vote once EVERY DAY from now until September 29th at 5 PM EDT
  • Go to VoteForSMA.com, select the Gwendolyn Strong Foundation, enter the two security words, check the Official Rules box, and then click “Vote Now!”
  • That’s it! It’s really that simple :)
  • Don’t forget to add your name to the DailyVoteReminder.com list so you don’t miss a $20K vote.
  • And…don’t stop there — SHARE!

Please remember my story and vote daily.  Help prevent this disease from affect another innocent life.

Thank you,

David Thomas

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