OLEAN ã This is Jim Kelly’s life now.
The Hall of Fame quarterback, a cornerstone of the Buffalo BillsÞ dynasty of the 1990s, sits on the veranda of the Bartlett Country Club. The sun shines behind him, framing the 17th hole in a scene straight out of a postcard.
He had just played golf with 36 people. Between post-round laughter and dinner, he does interviews with radio and newspaper reporters.
It’s all part of Kelly’s post-career crusade. It’s all part of his battle with Krabbe’s disease.
All in the name of his only son, Hunter.
“My main focus right now is to raise as much money as possible for HunterÞs Hope,” Kelly said. “Thanks to my son and our foundation, we will make a difference for other children. Everyone is mobilizing, because I know that I cannot do it alone.
Kelly was in Olean on Wednesday for the inaugural HunterÞs Hope Charity Golf Tournament. The event benefited HunterÞs Hope, Kelly’s foundation which raises money for the fight against Krabbe disease.
“It’s a perfect day…beautiful…awesome,” Kelly said, wearing a white golf shirt, khaki shorts and a white NFL cap.
Thirty-six golfers took part in the tournament, which was sponsored by the Olean Region Chamber of Commerce. All wore small white ßHunters Hopeà buttons on their shirts.
Kelly and her stepfather played a few holes with each of the nine foursomes.
“I know some of the guys here,” Kelly said. I got to know a lot of people in this region thanks to my football camp (which took place in Saint-Bonaventure). People here have been so good to me since our football camp (was here).
This tournament is one of many fundraisers held each year for HuntersÞ Hope. Over the past five years, the foundation has raised over $5 million.
“We get letters from all over the country,” Kelly said. “It’s not just (Western New York). People who want to do golf tournaments, people who want to do other things, and I can’t do everyone. I can’t.
See, aside from Hunter’s work and hope, Kelly and his wife, Jill, also have two daughters in Erin and Camryn. Both are in good health.
“My two daughters need daddy too,” Kelly said. “We try to divide our time with each of them, and it’s a little difficult. But they love it. For Camryn, (HunterÞs) her big brother. For Erin, she loves him to death, kisses him and wants to know what she can do to help him. She’s only seven years old and she’s as adorable as can be.
KRABBE’S DISEASE is a rare degenerative enzymatic disease of the nervous system. It affects the white matter of the brain, which controls most of our daily functions.
Hunter Kelly was diagnosed with Krabbe when he was four months old. The average life expectancy of babies with the disease is 14 months.
Last February, Hunter turned five.
When his father had his number retired at Ralph Wilson Stadium last season, Hunter joined him. When his father was inducted into the Pro Football Hall of Fame last month, Hunter was there.
While Kelly was at Olean raising funds, Hunter was at home, where he receives daily treatment from his mother, grandmother, and a group of nurses and therapists.
“I know he’s in the best possible hands,” Kelly said. “If it wasn’t like that, yes, it would be (hard to leave him). But I know he’s in very, very good hands, the best he can be in.
KELLY SPEAKS about medical procedures and treatments for Krabbe with the same knowledge and confidence he used to describe Buffalo’s non-huddle offense.
The foundation is currently focusing on screening. At least two million people carry the gene responsible for Krabbes.
Early detection is essential. Ideally, treatment begins on the day of birth of a child with the disease. Treatment includes chemotherapy, followed by a cord blood transplant.
And while there’s still no cure for Krabbe, the treatment is making life a little easier, a little better.
“I’ve seen it done,” Kelly said. “I saw children smiling and talking.”
Hunter never said a word. He hasn’t smiled since before his diagnosis. Which means, for Kelly, seeing kids a bit bittersweet.
ßIt makes me wish (the treatment) was there when my son was born, you know?
But there’s no self-pity here. After all, HunterÞs Hope has handed out over $3 million in grants for Krabbe’s research. You can tell these treatments wouldn’t be available without Hunter.
“It’s not hard, because I’ve accepted the way my son is,” Kelly said. “I know that thanks to him, we will help other children.
“You have to think that way, you can’t feel sorry for yourself, you can’t feel sorry for what you do. You need to be able to think positive and move on. I’m happy when I see things like that because I know what we’re doing is helping. When you see children like this being affected on the positive side, you know that all the time and effort you put into it is worth it.
This is Jim Kelly’s life now. Educate people about a rare disease and raise funds to fight it.
Dinner was almost ready now. The proceeds of the day had yet to be counted and there was still more money to be raised via 50-50 draws.
“Every penny counts,” Kelly said. “I don’t care what it is. It’s good that people here are ready to lend a hand and support us.
It’s all part of Kelly’s crusade.
All in Hunter’s name.
(Brian Moritz is a sports reporter for the Times Herald.)