Battle is over Kelly's son loses fight with disease
Jim Kelly was tough.
His son Hunter, as it turned out, was tougher.
Kelly, the gun-slinging quarterback from East Brady who led the Buffalo Bills to an unprecedented four consecutive Super Bowls, was noted for being strong-armed and strong-willed on the field.
Hunter, born with a rare nervous system condition, showed off his own toughness for more than eight years, fighting the crippling symptoms of Krabbe Disease far past his life expectancy.
But Hunter, whose health had been slipping for weeks according to Kelly's former coach and close friend Terry Henry, finally lost his battle with the illness and died Friday morning.
"I was actually headed to the Hall of Fame and I called Jim, who I thought was headed that way," said Henry, the former Seneca Valley athletic director who coached Kelly at East Brady High School. "I knew something was wrong right when he answered the phone. He said Hunter had passed away.
"Jim and I are close friends, and it was like I got punched right in the stomach."
Four months after Hunter was born, he was diagnosed with the inherited degenerative disorder of the central and peripheral nervous systems. The disease hinders the development of a layer that protects the brain's nerve fibers.
Symptoms, which include irritability and difficulty feeding, begin between 2 and 4 months of age. Later symptoms include loss of motor function, deafness and blindness.
The average age of death is 13 months. Hunter was given no more than three years to live.
He surpassed that timetable by more than five years.
"Hunter was so strong," Henry said. "Jim always said he was taking a turn for the worse for 8½. He always had infections, but (Hunter) always fought through them."
Shortly after Hunter was diagnosed with Krabbe Disease, Kelly founded an organization called Hunter's Hope Foundation, which has raised millions of dollars for research into the disease.
In recent weeks, Hunter, who always had problems with seizures, was having them more frequently, Henry said.
"I talked to him in July, and he said Hunter has not been doing well," Henry said. "They knew he could go at any time. It's been very, very difficult for them."
Kelly's goal was for Hunter to live to see him inducted into the Hall of Fame.
Hunter did, and he was in Canton, Ohio, in August 2002 when Kelly was enshrined.
"Since the day I was selected, I prayed to God that my son would be here with me today," Kelly said in his speech. "God has granted me that blessing. It has been written throughout my career that toughness is my trademark. Well, the toughest person I've ever met in my life is my hero, my soldier, my son, Hunter. I love you, buddy."
With Hunter's death, Henry anticipates that the Hunter's Hope Foundation will only get bigger and stronger.
"He wants to make sure no other kids are born with this disease," Henry said.
The Kelly family issued a press release Friday reasserting the foundation's goal.
"Hunter … served as an inspiration to thousands of other children and their families. The Hunter's Hope Foundation was founded in his name to fund research into the fatal disease and to offer hope and support to its victims worldwide," the release read.
Hunter was the longest living survivor with Krabbe Disease.
Henry said Kelly recently has been very active in the Republican Party in trying to get every newborn tested for the disease.
"Jim has pushed to have some 30 more tests done at birth," Henry said.
Kelly's family has requested that instead of sending flowers, people should consider sending a donation to the Hunter's Hope Foundation, P.O. Box 643, Orchard Park, N.Y. 14127.
