“We knew when we set up Hunter’s Hope we weren’t helping our son, we were helping other families,” said Jim Kelly, former Bills quarterback, whose son died of Leukodystrophy.
When Jim and his wife Jill lost their son to this rare and largely unknown disease, it inspired them.
“I think back to when our son was diagnosed we had no one to turn to and every decision we made had ramifications and it was trial and error and it shouldn’t be that way with your child,” said Kelly.
One of the biggest issues in dealing with an incurable and rare disease is that there weren’t a lot of others with shared experience or knowledge to turn to for support and guidance, he said, adding, “because they’re so rare families don’t know what to do and they often feel alone in their fight to figure out what to do for their children.”
That’s all going to change he says now that Hunter’s Hope has partnered with URMC to form a Leukodystrophy care network.
Kelly says it’s impossible to know what this could have done for his son, but he’s hopeful this care network will help others.
The network will help families with all aspects of care, connecting them with advocates, helping them make appointments and being proactive in treatment.