I have a beautiful 16-month-old little girl. She is a happy baby with a fighting spirit — and it is a good thing because she has already been through enormous challenges. My daughter, Gwendolyn, has a degenerative and terminal disease. Over the last eight months, I have grown accustomed to feeding tubes and medical machines filling her nursery. I have even come to terms with the knowledge that I will most likely lose my baby before she reaches the age of two…well, some days any way. I am hoping that you will consider helping me raise awareness about her little known but all too common disease by highlighting a petition my husband and I started.
My daughter, Gwendolyn, was born perfectly healthy October 2007. Unfortunately, at 9 weeks old she became very ill and was eventually diagnosed with Spinal Muscular Atrophy or SMA, the #1 genetic killer of infants. In fact, 1 in 40 people unknowingly carry the gene responsible for SMA. It is terminal. It is degenerative. It is cruel. Gwendolyn will never walk, never sit up unassisted, and spends most time completely flat where she is most comfortable. Some days I can not pick her up or snuggle her because the movement is too much for her. She may never speak, although we are hopeful. And while she currently has some arm movement, it seems to weaken every day. She needs help to breathe and even to swallow her own saliva. However, her mind is perfectly fine and already she wants so desperately to do all the things that her failing body hinders.
Although, Gwendolyn’s disease currently has no treatment and no cure, the National Institutes of Health (NIH) has described SMA as the disease “closest to treatment” and researchers claim they are just a few years away from finding a cure. And, there is landmark legislation, the SMA Treatment Acceleration Act, currently sitting in Congress that, if passed, would provide researchers the resources needed to make that last crucial step. In addition, SMA research has already benefited the research of other diseases, such as ALS/Lou Gehrig’s, Parkinson’s, Alzheimer’s, Duchenne Muscular Dystrophy, Tay Sachs, and many others. In fact, it is because so much is known about SMA that the national organizations consider it a “model” disease from which so much can be learned and put toward saving countless lives. (The bill has nothing to do with stem cell research.)
Having been initially told that there was nothing we could do but go home and love our baby (an impossible task, as you know), it is empowering to know we are so close to changing this outlook…and, perhaps, saving our daughter’s life. Thus, this summer my husband and I joined the battle being waged by the SMA community nationwide and created an online petition – as a grassroots effort to drum up broad national support for the SMA Treatment Acceleration Act. Our petition has received backing from the SMA community – FightSMA and Families of SMA – and to date has over 49,000 signatures from all 50 states and many countries. The petition has also been a useful tool in raising much needed awareness of this infant killer.
We are just one family fighting to end this cruel disease, but with the support of others it is within our reach. So please, as a parent, I am asking you to consider signing the petition(it takes 30 seconds) and helping us promote SMA awareness. With your support, thousands of children can have the future they so deserve.
You can learn more about Gwendolyn on our blog: www.GwendolynStrong.com.
Thank you for your time and consideration.