The University of Rochester Medical Center is set to open a center specializing in leukodystrophy, and to make the announcement, the school invited a family who knows all too well how devastating the disease can be.

“It all starts right here, at the U of R, right here in Rochester for all these kids that live in the state of New York that don’t have to travel to one of the care centers across this country and get care,” said former Bills quarterback Jim Kelly.

He and his wife, Jill, joined a team of doctors at Golisano Children’s Hospital for the announcement of the new Leukodystrophy Care Network Center, which will be the only facility of its kind in New York and one of only eight in the country.



 The center will allow families to find all the resources they need in one place, something that inspired the Kellys to get involved.

They lost their only son, Hunter, to Krabbe disease, a form of leukodystrophy.  

“If we don’t have doctors with a passion that the doctors here at the U of R, have to make a difference for those kids, they will not see tomorrow,” Kelly said.

Dr. Robert Thompson-Stone, director of the U of R facility, said the ability to care for children with neurological diseases “has reached a new level.”

Jill Kelly calls her family’s involvement with the center “a match made in heaven by God.”

"We’re not stopping until it gets done and even though I don’t know how many years I have left, but until I’m in the grave, I’m gonna keep fighting and as we – are Buffalo Bill fans right? – we will always fight and we will never stop," Jim Kelly said.