Lylah Gritter always had a smile that could light up a room.
She was born seemingly healthy in August 2013. But at about 4 months old, her parents noticed something wasn't right, as she began to lose strength, CNN affiliate WXMI reports.
At 6 months old, Gritter was diagnosed with spinal muscular atrophy, better known as SMA. SMA is the No. 1 genetic killer of children ages 2 and under, robbing kids of their physical strength, taking away their ability to walk, eat or breath.
The Gritters were told their daughter would have about six to nine months to live. That was three and half years ago.
Lylah Gritter is now 4.
Her family worked tirelessly to get her into a clinical drug trial that works to stop the progression of SMA, traveling from their home in Michigan to Dallas every four months for treatment. The drug essentially stops the progression of SMA.
Lylah is now doing things her parents and doctors never imagined could be possible.
In fact, Sarah Piper, her physical therapist at Mary Free Bed said she's never seen a child with SMA accomplish what Lylah has. She is standing, swimming, walking, ice skating and in dance class.
And of course, Lylah still has her smile.
Her parents said she's taught them 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 traveling 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 Gritters 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.