When Lylah Gritter was born on August 15, 2013, she seemed to be perfectly healthy. But her parents soon realized there was something very wrong with their daughter.
Baby Lylah rapidly began losing strength at around three or four months, according to WXMI. Her mom, Holly, explained that, despite getting a perfect APGAR score and passing her newborn screening, Lylah became “kind of noodly.” They originally joked that the baby was “lazy.” But at around six months old, doctors diagnosed Lylah with Spinal Muscular Atrophy, or SMA, a genetic, degenerative condition similar to Lou Gehrig’s disease.
“She couldn’t even turn her head from side to side as an infant. She couldn’t move her fingers. She didn’t talk,” Holly recalled.
At the time of her diagnosis, Lylah’s parents were told she would only have between six and twelve months left to live. But the cheerful little girl defied all the odds. Nearly four years later, she’s still fighting.
WXMI reports that Lylah’s family worked hard to get the little girl into a clinical drug trial to halt the progression of SMA. The Gritters travel to Dallas every four months for treatment, which has been working wonders for little Lylah.
Today, Lylah is accomplishing things that her family and doctors never imagined. In fact, Sarah Piper, Lylah’s physical therapist at Mary Free Bed Rehabilitation Hospital, told WXMI that she’s never seen a child with SMA accomplish what Lylah has. Now, the Gritters want to raise awareness about the existence of clinical trials to slow the progression of SMA so other families can take advantage of the same opportunity. They’re also pushing to have SMA included in newborn screening in the state of Michigan, so doctors can diagnose it sooner.
For more about Lylah’s journey, check out her family’s Facebook page.
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Footage provided by WXMI Grand Rapids
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