Little girl given year to live; still fighting 3 years later
Posted February 6, 2018 12:10 p.m. EST
Web Staff — Born on August 15, 2013, seemingly healthy Lylah Gritter always had a smile that could light up a room. But at around four months old, they noticed something wasn't right, as Lylah began to lose strength.
At six months old Lylah was diagnosed with Spinal Muscular Atrophy, better known as SMA. SMA is the number one genetic killer of children two and under, robbing kids of their physical strength, taking away their ability to walk, eat or breath.
The Gritter's were told Lylah would have about 6-9 months to live. That was three and half years ago, Lylah is now four.
Her family worked tirelessly to get Lylah into a clinical drug trial that works to stop the progression of SMA, traveling to Dallas every four months for treatment. The drug essentially stops the progression of SMA. Lylah is now doing things they never imagined. In fact, Sarah Piper, her physical therapist at Mary Free Bed says she's never really seen a child with SMA accomplish what she has. She is standing, swimming, walking, ice skating and in dance class.
And of course, Lylah still has her smile. "We don't live any different in our house, so whatever anyone else is doing we make sure she does it to. She's taught us so much about life, living everyday, you never know what tomorrow is going to bring. It's easy to say but when you really live it you really cherish everyday and life is great for her."
Lylah will continue to head to Dallas for the treatment for the next five years. The drug is approved by the FDA but not covered by medicaid. It's why the Gritter's are trying to raise awareness so other families can share in the opportunity. They are also working to get SMA on the newborn screening in the state of Michigan.