A St. Cloud man who lost his son to a rare genetic disease is asking Florida awmakers to raise awareness on the issue. A bill, if passed, could save the lives of other little boys.

Gabriel Grigsby was diagnosed with Adrenoleukodystrophy at age 8. It all began as a lazy eye but eventually it ended his life.

“Watching him decline was tough,” said his father, Pete Grigsby.

ALD is a disease that affects the nervous system. Little by little it stops telling the muscles what to do.

“It’s almost like his soul knew he wasn’t going to be here for very long,” Grigsby said. “And he just wanted to experience as much as he could.”

While there is no cure for ALD, a bone marrow transplant performed in a timely manner can stop the disease, but the damage done is irreversible. For Gabriel, it was too late and in two years he was gone.

A playground dedicated to Gabriel is currently under construction at Church of St. Luke and St. Peter. It is meant to raise awareness about ALD. This is just one of the ways Gabriel’s family wants to shed light on ALD.

Another thing they’re rooting for is a bill known as “Gabriel’s Law” which was recently filed by State Rep. Mike La Rosa, R-St. Cloud. This legislation would require at-birth screening for the disease.

“You're not aware of rare diseases and currently right in Florida we test for 53 different diseases and this would ultimately be a 54th,” La Rosa said.

While this is the third time this bill is filed, Grigsby says he will keep on fighting for the sake of other little boys.

“If with newborn screening you can find it and diagnose it, there’s no reason to not do it,” Grigsby said. 

Gabriel’s father urges residents to call their Florida lawmakers in support of this bill.