BUFFALO, N.Y. —
- Krabbe leukodystrophy is a disease that claimed the life of Buffalo Bills Hall of Fame quarterback Jim Kelly's son. Kelly and his wife Jill have been fighting to make sure no other families endure what they had to with their son Hunter.
Not long after Hunter was born, he was diagnosed with Krabbe leukodystrophy. It's a disease of the nervous system that affects the brain's white matter.
Hunter lived eight years.
If screened at birth, the outcome can be different for children diagnosed with Krabbe.
This week, at a meeting of the advisory committee on Heritable Disorders in newborns and children, the vote was 10-3 to add Krabbe leukodystrophy disease to the recommended newborn screening panel. It will now go to the Secretary of Health for final approval.
The Kelly's have been fighting for screening along with their organization Hunter's Hope.
"I broke down in tears because I understand how important Hunter's life was, but I also know that what we're doing with Hunters Hope is making a difference," Jim Kelly said.
"We've been advocating for newborn screening. Why not add Krabbe leukodystrophy to the panel and we just couldn't believe it's taking this long for everybody to understand why this is not being tested," Kelly said.
His wife Jill said "the fight continues, but this is a tremendous victory and a huge hurdle that we are finally over."
Currently, 11 states screen for Krabbe disease.
U.S. Rep. Nick Langworthy (R) said in an interview with Channel 2's Claudine Ewing, "we were thrilled yesterday with the news that Krabbe has indeed been included on this screening panel, and hopefully you know this will lead to a lot of early detection."
He added "if they can detect it early, they can treat it early and and hopefully give that beautiful young child a leg up in this fight."