Lylah Gritter, born on August 15, 2013, seemed to be a healthy baby. 

 

However, baby Lylah didn't progress regularly. At around four months her mum, Holly, noticed that Lylah's limbs were getting “kind of noodley.”

 

"We used to joke that the baby was lazy,"  she confessed to local media.

 

 

At 6 months old, doctors diagnosed her with Spinal Muscular Atrophy, or SMA, a genetic, degenerative condition which affects one in 6,000 babies. 

 

The number one genetic killer of children under the age of two, SMA robs babies of all physical strength as well as the ability to breathe and feed themselves. 

 

“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.

 

 

Doctors told the family at Lylah only had six to twelve months to live, four years later they're still defying the odds. 

 

But her family refused to give up on her. Thanks to their tireless efforts to get Lylah onto a clinical drug trail, she can now walk, stand and swim. 

 

The family travel every four months for Lylah's treatment, where she receives a drug that stops the progression SMA. In fact, physiotherapists and doctors says that she's the most improved SMA patient they've ever had. 

 

 

"We don't live any different in our house," Holly said. "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 her treatment for the next five years and her family are working to raise awareness about SMA and give hope to families in similar situations. 

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