Like the family in the video my family has traveled to Washington DC to lobby in support of the Spinal Muscular Atrophy Acceleration Treatment Act. My daughter Kiley was diagnosed with Spinal Muscular Atrophy at the age of 16 months old. She has never taken a step or rolled over on her own and yet with such physical limitations she is beautiful, smart and funny. Most people have never heard of SMA and yet it is the leading genetic killer of children under 2. I speak for families that are fighting every day to keep their children here on earth with them. We have learned a greater appreciation of each day and each simple moment with our children. We do not know when they may be taken from us. SMA causes progressive loss of muscle control right down to swallowing and breathing. It is devestating. The only silver lining to this dark cloud is that the National Institute of Health has identified SMA out of 600 neurological diseases as being the closest to a treatment or a CURE! New drugs are right on the horizon that are in the last safety stages before going to human clinical trials. Please help us to get the SMA Acceleration Treatment Act passed on Capitol Hill, go to petitiontocuresma.com. You can help make a difference to so many families! For more information about SMA or to make a donation go to fightsma.com.
Please help save lives now!
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