We have followed a local toddler’s story as she battled a rare and often fatal genetic disease. Jaylah lost her battle this week and Friday as her family said their final goodbye, they had a renewed plea for lawmakers.
“If it was your kid, if you were standing here today, you would have that bill passed. No other family should go through this. She was two years and three months.We shouldn’t be burying our child,” said Jaylah’s grandmother Angel Custer.
Jaylah’s grandparents, Angel and Anthony shared her story to spread awareness of her disease and in hopes of expanding newborn testing. Jaylah was fighting Krabbe Disease, a rare and usually fatal disorder that affects the nervous system. Because of the disease Jaylah could not walk, talk or swallow on her own. If Jaylah had been tested at birth, it could have altered the course of her disease.
“I will miss her forever and I will always love her. I’m really proud of her,” said her grandfather Anthony Shaffer.