Fannie Weinstein
September 05, 2005 12:00 PM



Retired Buffalo Bills quarterback Jim Kelly can’t quite believe that his little boy is gone. “We thought,” says Kelly, “that he was going to be here forever.” Hunter, 8, described by his father as “the toughest person I’ve ever met in my life—my hero, my soldier, my son,” suffered from a rare terminal illness known as Krabbe disease (see box). Although Hunter fought valiantly against it and survived much longer than most of its victims, on Aug. 5 he died of respiratory failure brought on by the disease. Twelve days after his funeral, a grief-stricken Jim and his wife, Jill, eager to raise awareness about Krabbe and other congenital illnesses, talked about their son’s life and final moments.

Jill Kelly: Beginning around Aug. 1, Hunter just didn’t seem like himself. He had a few days where he was struggling to breathe. He was quieter than usual. At one point, his temperature spiked to 105°, but by Aug. 4, he seemed better. When I got to my parents’ house [where Hunter sometimes spent the night], my mom and Hunter were in the swimming pool, and I remember thinking, “Oh, Hunter, you look so good.” I thought he was turning the corner.

At midnight, after Hunter fell asleep, Jill drove an hour back to the Kelly house in the Buffalo, N.Y., suburb of Orchard Park, intending to return the next day.

Jill: At 5 a.m. Jim woke me to say my father had called and that Hunter was being rushed to a hospital 45 minutes from our house. My mother was giving Hunter mouth-to-mouth resuscitation because he wasn’t taking breaths on his own. I flew out of the house. I don’t know how I got to the hospital. I just remember screaming the whole way there.

Jim called a neighbor to watch the couple’s daughters—Erin, 10, and Camryn, 6—and raced to join Jill at the hospital.

Jill: The ER doctors were still performing CPR, but in my heart, I really felt that Hunter wasn’t there. My face was right next to his, and I was whispering in his ear, “It’s okay. It’s okay. Mommy’s here.” Hunter didn’t blink or anything, which was the way he communicated with us [because he couldn’t speak]. But I believe he heard me. Sometime before 8 a.m., I asked the head doctor, “Is there anything more you can do?” He said, “No.”

When it was time for Jim and me to say goodbye to Hunter, I put my arms around his head and snuggled him next to me, and I just cried. Jim was on the opposite side of the bed holding his hand.

Jim: I thought he’d come through it, like he always had. He’d had pneumonia 20 times. A year after our first daughter was born, when Jill learned she was pregnant again, of course I wanted a boy. I thought of football, basketball, camping, fishing-all the things I’d do with Hunter. Then, when he was diagnosed at 4 months, we were basically told to go home and make him comfortable until he passed away.

Hunter was confined to a wheelchair and attached to a feeding tube, but his family learned how to enrich his life.

Jill: For a long time, every day I thought he was going to die. Then, somehow, we started treating him like he was living instead of dying. We started taking him everywhere—snowmobiling, fishing, the movies. He liked to get his hands dirty, so we’d bake. It was like a whirlwind of life flowed into this house.

Jim: He and I would watch football games together, and just to be able to enjoy that with him was unbelievable.

Jill: Neither Erin nor Camryn ever said, “You spend too much time with Hunter.” They didn’t just hug him; they would tackle and hug him.

Jim: They could be rougher with him than anyone else could.

Jill: I never thought Hunter would have a best friend. But he did-Robert, whose mom was his physical therapist.

Jim: Robert treated Hunter the same as his other friends. He’d introduce Hunter to his football teammates and say, “This is my best friend, Hunter.”

Jill: There’s a time to mourn and a time to dance. We’re mourning, but at the same time, we’re celebrating a very special person. Hunter couldn’t smile, but we saw joy in him. From start to finish, I couldn’t have asked for anything more.

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