Written by Carice Creighton Smith, head of FightSMA Hanover and this month’s Party with a Purpose 2013.
Every day, kids with SMA fight a fierce battle just to live. Spinal Muscular Atrophy (SMA) kills more young children than ANY other genetic disease. It’s an under-funded, incurable neuromuscular disease that robs children the ability to walk, talk, swallow, eat, and some, to even breathe on their own. While the mind remains unaffected, the muscles waste away. 1 in every 40 people carry this gene, unknowingly. Due to the lack of federal funding and the awareness it needs and deserves, the task has been left to the families and friends of these amazing, inspirational fighters, to GET the funding & awareness so desperately needed.
My son has been fighting SMA since he was born. And what a fighter he is! Continuing to beat the prognosis that he would not live past the age of 8, Andrew will turn 21 this September. Since 1998, our family, along with friends, has been supporting the national organization FightSMA by coordinating events for our chapter, FightSMA Hanover, “To strategically accelerate the search for a treatment and cure.”
With continued support, it has been amazing to see the awareness and attention that has been brought to SMA! SMA-specific drugs have already entered clinical trials. We fund researchers across the globe. The National Pediatric Research Network Act (NPRNA), which specifically addresses SMA and other rare, life-threatening pediatric diseases, has been passed in the House and is currently generating support in the Senate. Significant strides have been made in the care of kids living with SMA, giving clinicians and parents the tools and resources they need to care for their children and give them a “fighting chance!”
FightSMA is truly making a difference. But the road is long. Every day, a child is diagnosed with SMA. Every day, a parent is told to take their child home and, “enjoy the time time they have.” So we continue fighting!
On behalf of my family and all children & families who bravely endure this terrible disease and in memory of those who have lost the battle, thank you! Until no parent has to count their child’s life in months…sometimes days, we will continue fighting and I hope you will join us!