Last January, with his wife, Jill, pregnant with their second child, Jim Kelly, quarterback of the National Football League’s Buffalo Bills, retired from the game. During 11 years in the NFL, he had tasted victory and disappointment, leading the Bills to the Super Bowl four years in a row—only to lose each time. But Kelly had invested his money well, and he looked forward to spending time with Jill, their 2-year-old daughter, Erin, and their new baby.
When his son, Hunter James, was born a few weeks later on Valentine’s Day—Kelly’s 37th birthday—it seemed as if all the pieces had fallen into place. Then, less than five months after he was born, Hunter was diagnosed with Krabbe’s disease, a degenerative neurological condition that will slowly erode his sight, hearing and all his mental faculties and that is invariably fatal.
Krabbe’s, one of a group of illnesses known as leukodystrophies, occurs in only about 40 people each year in the U.S.—primarily infants—according to Dr. David Wenger, a Krabbe’s specialist who confirmed Hunter’s diagnosis. Wenger says the average Krabbe’s baby dies at 13 months, and there is only one known case of a child with infantile Krabbe’s reaching the age of 2.
In the months since Hunter’s diagnosis, Jim and Jill Kelly, 28, have struggled to make sense of their son’s illness. In September they established Hunter’s Hope, a foundation dedicated to spreading awareness about Krabbe’s disease and raising funds toward finding a cure. In his spacious home in the Buffalo suburb of Orchard Park, not far from the stadium where he led the Bills, Kelly talked with PEOPLE correspondent Tom Duffy about the sorrow of raising a fatally ill infant and about his and his wife’s efforts to give meaning to their son’s brief life.
I WAS SO HAPPY BECAUSE I HAD THE son that I always wanted, and he seemed perfectly healthy. We were all going to live happily ever after. The first couple of days after he was born he was irritable. But we thought it was just coming home and that he wasn’t used to the new surroundings. He would sleep for an hour and a half, maybe two and a half if we were lucky. And it was hard to feed him because he just choked on it. It took him about an hour to get an ounce down. At times he would just be screaming and crying for hours with tears coming out his eyes. And he was stiff as a board sometimes. Jill’s mom said, “Jill, you had colic, and this doesn’t look like colic to me.”
When we took him for an appointment for an ear infection, the doctor told us he was showing signs of cerebral palsy. We went to a neurologist at the Children’s Hospital of Buffalo. What she said was, “I want to have some blood work done to rule out leukodystrophies.” It was the first time I had ever heard the word. Jill looked it up and said there was no way it was leukodystrophy because that’s genetic. There’s so many kids on both sides of the family, and every one of the children are fine. [Kelly and his wife both later turned out to carry the defective gene that causes Krabbe’s.]
When the doctors got the blood test back, they asked us to meet them down at their office. They didn’t need to tell me or Jill that it was going to be something bad, because I knew they would tell us over the phone if it wasn’t. When they told us what it was, my heart went to my feet, and Jill started crying. You think that your son has cerebral palsy, and that’s devastating enough. Then to find out he has a fatal illness—that’s bone-crushing.
At the beginning it was devastating for both of us. But I’ve always been one to be able to try to find the positives in everything. One of the things that was my biggest asset, not only in sports but life in general, is that you’re going to be confronted with negative things, and it’s how you react to them that’s most important. My thing was just to make sure I was there for my wife when she needed me there.
Until we got over the initial shock, we didn’t know what to do. You try to find words, but words don’t always provide the answers. Jill and I went for months without being able to sit down and talk to each other. There would be times when Erin would go to sleep at 8:30 or 9, and Jill would just fall asleep with her because she was so exhausted, and I would come home and I wouldn’t even see her. That took its toll. But as much as at times it seems to be pulling us apart, it has also drawn us closer.
I’ve become a lot closer to my daughter. Jill never wants to leave Hunter’s side, so I spend more time with Erin. Before, she was pretty much Mommy’s little girl. But now she’s Daddy’s little girl. She knows Hunter has a boo-boo. She always says, “Hunter boy, you will be all right.” Jill is around a lot more than I am because I have to go on the road for my job as a color commentator for NBC Sports.
In July right after Hunter was diagnosed, they implanted a tube in his stomach because he pretty much had lost his swallowing reflex—he’s on antiseizure and antireflux medication. So I get the bottle ready and I get the tubes ready, and Jill feeds him after I pour the formula into the bottle. I pretty much do the legwork and I’m the cleaner and filler-upper. At night Jill takes a Jacuzzi with him. He loves it. Usually he falls asleep in there, which is good. It seems like it relaxes his joints and muscles.
Hunter opens his eyes every once in a while. He realizes that we are there, but we don’t know what his sight is like. They say I’m tough. But to be able to do what Jill does—I could never do that. The patience that she has, the motherly instinct, is unmatched. She’s the mother every child would love to have. It just amazes me how much strength she has.
I’m Irish Catholic. I’ve always prayed. I believe in God. I don’t think I’d say that I’m any more religious now; I just say more prayers than I’ve said before. I pray for a miracle for my son because that’s what he needs right now. I’ve heard from other people, like [Miami Dolphins quarterback] Dan Marino, who has a son who is autistic, and [Cincinnati Bengals quarterback] Boomer Esiason, whose son has cystic fibrosis. We always say, just pray for us, because we need it.
These days, Hunter’s a lot better than he used to be. His irritability isn’t as bad. Because of the medication, he’s not suffering as much. But we know he’s not going to get better. And those days that he seems fine don’t mean the day is fine for us. I think about it all the time, I think about it when I’m on the road. And Jill’s with him 24 hours a day, so I’m sure that she thinks about it constantly.
It’s not the same Kelly household. It’s depressing, because you think you had the world in your grasp and then, boom, this hit. It’s very hard to explain how I feel. I’d trade every penny that I’ve made for a healthy son.
There’s nothing we can do to help him as far as medication goes. What we’re doing is loving him and giving as much care as we can. Our way of loving him is to help others. And setting up Hunter’s Hope is our way of being able to keep my son around for life. Through Hunter’s Hope, we’ll always know that in some way he helped some other kids down the road. People say there is a reason your son was born: to help spread the awareness and help fight this disease. We definitely want to have another child. But because we both carry the defective gene, there’s a 25 percent chance the baby would have Krabbe’s. I wouldn’t put another son or daughter through this.
You’re prepared for the worst, but you never want to think about it. I don’t think I’ve ever mentioned the word [death]. We’re going to give him as much love as we can because you never know how long he’s going to be here. We’re just holding him as much as we can. Don’t feel sorry for me. Just hug your child and know how blessed you are to have what you’ve got.