Hunter’s Hope : Jim Kelly’s Son Has His First, and Possibly Last, Birthday; Ex-Quarterback Helping Fund Research on Rare Disease

The stories are bound in three-ring notebooks and sorted in the basement of Jim Kelly’s home. They are individual tales of misery and prayers of hope.

They come by the thousands in letter form for Hunter James Kelly, the ailing son of the former Buffalo Bills quarterback. The two shared a birthday on Valentine’s Day, Hunter’s first birthday and possibly his last.

“You thank God every time you wake up in the morning and your son is there,” Kelly said. “This is the most ultimate for me, sharing this special birthday with my son. You don’t know if age 2 will be around.”

Hunter Kelly has Krabbe’s disease, a degenerative disorder of the nervous system that typically kills its victims in the first 13 months. He acquired the disease from a rare gene in both parents. Kelly and his wife, Jill, have a healthy daughter, 2-year-old Erin.

Since Hunter was diagnosed last August, the Kellys founded Hunter’s Hope Foundation and raised nearly $2 million, including $500,000 from Kelly and another $500,000 from celebrities attending a fund-raiser in New York last month.

“Everybody everywhere knows about Krabbe’s now,” Kelly said. “Our No. 1 objective at the beginning was to raise awareness. I think we’ve done exactly what we wanted to do.”

Hunter’s Hope will help fund research on Krabbe’s disease and other leukodystrophies. A team of medical and financial experts will decide how to best handle the money.

“We want to have a facility in Hunter’s name,” Kelly said. “That’s our ultimate goal, to have our own building with Hunter’s name on it so it will live forever.”

Doctors know that Krabbe’s will always exists because of the genes. What they are looking for is the perfect therapy to treat the genes in both parents before babies are born.

Money for research had been the biggest obstacle before Hunter’s Hope. Even if he dies, Hunter will have a hand in beating the disease that first beat him.

“(The Kellys) have greatly enhanced education,” said Ron Brazeal, executive director of the United Leukodystrophy Foundation in Sycamore, Ill. “A great many people have called our office. We ask them why they call. More often than not, it’s because they heard about the Kellys.”

Jim and Jill know their work is being done by the letters that reach Hunter’s Hope headquarters in their home. They come from people who have endeared themselves to Hunter without ever grazing their fingers across his lips or playing with his pudgy feet. They are the ones who find the deepest place in Jill Kelly’s heart as she combs through notes and cards over boxes of tissues.

“It’s a very emotional thing for me,” she said while feeding Hunter through a tube in his stomach. “I bawl my eyes out because I can’t believe people care so much. I know a lot of it has to do with Jim, but it goes farther than that. People recognize Hunter for himself, not just for being Jim’s son.”

Quarterback Doug Flutie, after receiving a $25,000 signing bonus from the Bills, gave $12,500 to Hunter’s Hope. Dan Marino, Emmitt Smith, Steve Young, Bruce Smith and Thurman Thomas are among dozens of NFL donors.

Kelly recently signed a contract with Flagship Mortgage Services Inc., which told him it wants to raise $1 million for Hunter’s Hope within a year. Kelly barely raised that much for Kelly for Kids in 10 years.

“It’s not the amount. It’s people realizing they want to be a part of helping kids,” Kelly said. “It just shows, when it hits family, it’s a different animal.”

Among well wishers such as Nancy Reagan, James Caan and Kathie Lee Gifford was a 9-year-old girl who wrote, “Hunter, I hope you can stay on Earth a little longer.” Included was her allowance, $1.

A boy sent $105 after asking friends attending his 10th birthday to bring a donation for Hunter’s Hope rather than a gift. One woman sends cards, signed simply by “Gramma.” An inmate at Elmira Correctional Facility sends money he earns from his prison job.

The envelopes come with songs, poems and pictures. They have been sent from every state, from rich and poor explaining personal tragedies and happiness regarding their children. The letters typically start with, “You don’t know me, but . . . “

“You have to appreciate your children every day because you never know what tomorrow holds,” Kelly said. “That’s what Hunter’s Hope is. You have no idea how many letters we get from people with normal children who are 100% healthy. They’re spending more quality time with them because of our message.”

The Kellys celebrated their son’s birthday with some 30,000 others this weekend, an event marked by New York state as Hunter’s Day of Hope for Children. The idea was for all parents to give their children more time and love.

When Hunter was born, Jim Kelly told anyone willing to listen how proud he and Jill were to have a son. Only recently have they recognized that are more proud OF their son.

“I’m proud of his will and his courage,” Jill Kelly said. “He has had to struggle to want to be here. He represents all the things that we take for granted. He makes me appreciate his mere existence. And look what Hunter has done already for so many others.”

Hunter’s Hope, c/o Kelly for Kids, Gateway Park, Suite 12, Buffalo, N.Y. 14206