WASHINGTON, D.C. -- There’s a little girl in North Mississippi who doesn’t get around or play as much as other kids her age. But her story could have a lasting impact on the nation.
Evie has what’s called SMA or Spinal Muscular Atrophy. It is the number one genetic killer of children under the age of two. “This often unforgiving neurological disease leaves children weak and unable to move, breath, swallow or talk,” explained Mississippi Congressman Greg Harper.
But he said Evie’s dad recently told his staff that Evie has had a very promising visit with a doctor in Texas. “As a result, Evie’s quality of life continues to improve.”
And that’s something Harper wants for all children with rare diseases. He’s asking Congress to pass the National Pediatric Research Network Act of 2013. “This bill rightfully develops pediatric research consortia to identify and promote therapies for rare childhood diseases, such as Spinal Muscular Atrophy.”
Harper made his plea for support on the House Floor.