By Eileen Buckley
Buffalo, NY – Hunter Kelly, son of Hall of Fame quarterback Jim Kelly, continues to beat the odds against Krabbe disease. Kelly says his son is the "toughest little boy" he's ever met.
Individuals born with Krabbe normally don't live past the age of two. But just a couple of week's ago Hunter celebrated his sixth birthday, and Kelly says that's a "miracle." The disease affects the central and peripheral nervous systems. Kelly says his wife Jill spends many sleepless nights taking care of Hunter.
"I thank God every day for my wife. There's no possible way I would be able to do what she does," Kelly said. "She probably gets a total of 20 hours of sleep a week."
Hunter has no muscle control in his throat and can not swallow on his own so he must undergo what his father describes as "suction," sometimes up to 200 times a day. Hunter also has a feeding tube through his stomach.
"He's on a machine 24-hours a day that feeds him through his belly," Kelly explained. "He has what is called a J-G tube. It goes into his intestines. But he doesn't have too worry about the really hard refluxing. He's still has it, but it is not as bad."
Kelly says a majority of Krabbe patients die from a mucous build-up in their lungs. But Hunter receives daily chest therapy and also undergoes physical, occupational and speech therapy five to six days a week. Kelly says the type of constant care his wife, mother-in-law and nurses provides for his son is the reason Hunter has survived. Kelly says he has made it his life long commitment to find a cure.
"It's a battle every day, but that's our life and that's what God has given us," Kelly said. "We are recipients of a very special child, and I would want to change it for anything in the world because we are making a difference for all other kids out there."
Kelly talked about caring for Hunter as he accepted a $12,000 check from Buffalo Destroyers owner Mark Hamister Tuesday for the Hunter's Hope Foundation.
Kelly says research dollars will be used screen women before they give birth for the gene that causes the disease. He says there are more than twomillion carriers of Krabbe.