Author's note: Hunter Kelly passed away on Friday, Aug. 5, 2005, succumbing to his lifelong battle against Krabbe disease. He was just the tender age of 8 years old. In February of 2004, I was invited into Hunter's home to speak with his parents, Jim and Jill Kelly, as part of the research that I was doing for my book "Buffalo Soul Lifters." What follows is the fruit of those efforts. It is offered here in tribute to the brave little boy who touched hearts all across America. It comes wrapped in the hope that in heaven Hunter is enjoying what he was denied here on earth: the opportunity to run through the fields with the summer sun shining on his face, surrounded by the sound of his own sweet laughter. Long may his spirit shine.
"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." -- Hunter's Hope motto, from Jeremiah 29:11.
Hope may be the most splendid word in the English language. It's what we cling to when all else is lost. It lights the darkened path before us and lets us know that it's safe to lay the next footstep down. It is hope that renders useless the word yield and hope that swirls sweetly around each dream of tomorrow.
The essence of hope has never been captured better than in the words of poet Emily Dickinson:
"Hope" is the thing with feathers --
That perches in the soul --
And sings the tune without the words --
And never stops -- at all --
Hope redeems the phrase "four-letter word." Hope listens, comforts and heals. Hope, of course, is what springs eternal.
It is the gift of hope that a 7-year-old Orchard Park boy has given to his family, his community, and to the world.
Hunter James Kelly was born on Feb. 14, 1997, with great expectations for his life. His father, Jim, retired Hall of Fame quarterback for the Buffalo Bills, wished for nothing more than a son to toss a football to out in the backyard. Jim dreamed of teaching Hunter to hunt, fish and do the type of "guy" things that he had growing up with his five brothers in East Brady, Pa. Jill Kelly looked upon her newborn son with the special type of love that's reserved for mothers and their children. Her desire for Hunter was not unlike that of most mothers for their baby boys -- to follow his dreams and make them come true. Jill dreamed of helping Hunter reach the highest altitudes while knowing that his tightrope in life would always be surrounded by a safety net woven from a mother's love.
The Kellys had no way of knowing on that joyous Valentine's Day in 1997 that Hunter would exceed those expectations and take all of their lives in directions never imagined.
"From the moment that we brought Hunter home from the hospital I knew there was something wrong -- he cried all the time," Jill said as she sat at the dining-room table of her Orchard Park home on a sunny February morning.
When Hunter was 4 months old, the Kellys would hear the words from neurologists at Children's Hospital that turned their world upside down. Hunter had Globoid Cell Leukodystrophy, commonly referred to as Krabbe disease. There is no known cure and the disease, which attacks the central and peripheral nervous systems, is fatal.
"They basically told me that there wasn't anything we could do but take him home and make him as comfortable as possible," Jill said. "The truth is that I spent the first 14 months of Hunter's life waiting for him to die."
A fact that's not often discussed is that nearly 80 percent of marriages, when a special needs child is born, end in divorce. The Kellys were not immune to the strain that Hunter's around-the-clock care put on them.
"I spent a lot of that time in the first year after Hunter's diagnosis being angry at Jim," Jill confided. "I was upset that he wasn't doing what I was doing, which was spending every moment with Hunter. It wasn't until later that I realized that guys handle things differently and that Jim was just coping with things in the best way he knew how."
"She sometimes gets mad at me that I don't cry," Jim confided. "I grew up in a family of boys where, if you showed emotion, it meant you were weak and it got you a swat on the behind. She has no idea how many times I've broken down over Hunter when I've been alone."
Fortunately for Jill and Jim, they were able to draw strength from two very powerful sources -- their mothers.
Alice Kelly was always "Mom" to everyone, even when Jim was a child.
"When we played midget football, if some of the kids didn't have clean enough uniforms, she'd take them and wash them," Jim said of the woman he affectionately referred to as St. Alice.
"Even during my days with the Bills when we'd have the big post-game parties here, guys like Thurman Thomas and Bruce Smith would come in and before they'd even grab a beer, they'd sit down with her at this table and talk over the game.
"Near the end of her life she struggled with emphysema and she would sit in our living room and watch the games. She had her oxygen tanks. When we brought Hunter home from the hospital, he had the same exact type of oxygen tank. I think it was my mom's way of showing me that he has the same spirit that she had."
Jill's mom, Jacque Waggoner, played an even more direct role in helping the Kellys deal with Hunter's illness. A very successful businesswoman, she took a leave of absence from her job and immersed herself in research to uncover the best ways to aid Hunter.
"If I can be one-half the mother to my kids that my mother has been to me, my children will be very blessed," Jill said. "She is the strongest, smartest person I know. Without her guidance, I'm not sure where we'd be right now.
"Hunter helped me realize that God has a plan for us all, far beyond what we can imagine. I knew that one day Hunter would be in heaven and that I wanted to be there with him, but I needed to do more than just talk about it."
What the Kellys decided to do was to establish Hunter's Hope -- a not-for-profit organization dedicated to raising awareness of Krabbe disease and to providing funding for the research into finding a cure. To date, the organization has awarded over $3.5 million for Leukodystrophy research and has led the way in helping to raise awareness of cord blood transplants. These procedures involve using leftover blood from a newborn's umbilical cord and placenta to help Krabbe babies generate the white matter crucial to normal nervous system functioning. Since 1996, over 25 children born with Krabbe disease have had their lives saved with this treatment.
Hunter's Hope has helped Krabbe families in another more basic way by giving them an outlet to communicate with others facing the same issues. Before Hunter's Hope was established, many families felt as if they were on an island with nowhere to turn for support.
"We have a symposium every year in Ellicottville," Jim said. "Part of the symposium is a group talk. Usually it is just for the women, but this past year (2003) we had it for the guys."
"There were about 40 guys gathered around in this big room and we went around and everyone told his story. Almost all of the guys have kids who have Krabbe now or who have passed away from it. Some of the toughest guys there were the ones that broke down the hardest."
Communication is the heartbeat that drives the Hunter's Hope organization. Not only do families with Krabbe babies now have a network of support to draw from, but many who come in contact with the organization are inspired to build bridges to their own children.
"Hunter has inspired so many people to hug their kids and to realize what a blessing they are. Knowing that each day spent with your kids is a miracle. That's what Hunter's Hope is saying to everyone," Jim explained.
The Kellys credit one another for being such good parents for Hunter and their two daughters, Erin and Camryn.
"I've been honored to have been given the 'Father of the Year' award a couple of times," Jim said. "It's my wife that should get all of the awards. I was lucky enough to marry the 'MVP' of mothers. Because of her, my kids are the luckiest kids in the world."
Hunter spends much of his time working with his physical therapists. A handsome young man, he is the spitting image of his father, but the sparkle in his eyes is definitely inherited from his mother.
"Every day there are miracles in our home," Jill said. "Every time Hunter gains a new movement or furthers his ability to communicate, it's a miracle from God."
Hunter is now one of the oldest living persons with Krabbe disease and he continues to amaze his doctors and caregivers.
Where the Kellys once feared that Hunter might not celebrate his first birthday, he's now enjoyed seven of them. Each day of his life is a new record and another miracle.
On Feb. 14, 1997, Hunter James Kelly celebrated his own birth by giving the world a giant gift-wrapped box. Inside was a neverending supply of the world's most precious commodity -- hope.
|Niagara Falls Reporter||www.niagarafallsreporter.com||Aug. 9 2005|