Rare Disease Report

Hall of Fame Quarterback Jim Kelly Preaches Advocacy and Early Detection

AUGUST 23, 2017
Mathew Shanley

To some, the highs and lows in the life of a Hall of Fame quarterback can be seen on the back of a trading card.

Completions and incompletions. Touchdowns and interceptions. Wins and losses.

Former Buffalo Bills quarterback Jim Kelly is commonly referred to as either a 4-time American Football Conference (AFC) champion or the victim of 4 consecutive Super Bowl losses, but pieces of sports trivia hardly define him. It’s what he’s experienced and accomplished after his career – as both the parent of a rare disease patient and a cancer survivor – that are his defining characteristics.

In 1997, after his retirement from the National Football League (NFL), Kelly was blessed by the birth of his son Hunter. Soon thereafter, the newborn was diagnosed with globoid-cell leukodystrophy, or Krabbe disease.

Suddenly, a life once consumed by leading a football team transitioned into the journey of an advocate.

Krabbe Disease is a rare and commonly fatal lysosomal storage disease which results in progressive damage to the nervous system due to the body’s inability to produce myelin; the protective material that surrounds neuronal axons. Symptoms typically include muscle weakness, spasticity, deafness, optic atrophy, optic nerve enlargement, blindness, paralysis, and difficulty when swallowing, and it is most commonly mistaken for cerebral palsy in its early stages.

“What I heard, many years ago, was that I was a ‘chosen father’ with a sick little boy because I could make a difference. I didn’t want to hear that,” Kelly said in an exclusive interview with Rare Disease Report. “I understand why I went through that now, and it’s because I can make a difference.”

At the time of Hunter’s diagnosis, the average life expectancy for a baby with the disease was 14 months. While trying to meet the extreme medical requirements necessary to keep Hunter alive, Kelly and his family became acutely cognizant that other families were experiencing similar hardships. Because of the unlikelihood of his only son experiencing his first birthday, Kelly wasted little time and founded the nonprofit organization Hunter’s Hope within a year.

“I have always been a person that wanted to do something for others. I realized that I was blessed to have the athletic ability to play football, and I always wanted to give back,” Kelly said. “That’s why we set up the foundation. When he was diagnosed, we had never heard of Krabbe leukodystrophy. We were like, ‘What’s that?’ Now, more people are starting to learn about it.”

Every summer, the foundation hosts the annual Hunter’s Hope Family Symposium in New York. The event brings the world’s most respected leukodystrophy experts and families affected by the conditions together for a week of learning new information and sharing experiences.

“I wish things would happen just like that,” Kelly said as he snapped his fingers, “but they don’t. They take time.”

“By everybody pulling together, egos are checked at the door. I’m talking about doctors and scientists because 15-16 years ago, people didn’t want to share what they were doing or what they did. Now, we’re all a family. There are people who have been coming for 15-20 years that are making splashes. There are kids now that come now to our symposium that had the same exact disease as my son Hunter did, and they’re walking, talking and smiling. They’re doing everything as a normal child. If we wouldn’t have set up the foundation, those kids wouldn’t have been able to do this.”

Hunter Kelly passed away in 2005 after 8 spirited years. Kelly hasn’t let his advocacy efforts fall by the wayside.

In 2004, the Hunter James Kelly Research Institute was opened at the University of Buffalo. There, neuroscientists and clinicians study myelin and its association with various neurological diseases. Every year, he celebrates Hunter’s Day of Hope on February 14th, a birthday that he shared with his son.

Additionally, he has turned his attention to early detection and newborn screenings, and stresses their importance in many of the keynotes he gives as a motivational speaker.

“You find out 4 or 5 months into your life that (your child) has been diagnosed with this disease and later, you find out that if he was diagnosed at birth, that he could be walking, talking and smiling?”

“Why does this state test for 25 diseases while this state is testing for 60 and that state is testing for 43,” Kelly asks emphatically. “Give all of these kids a chance to dream. There are 65 diseases that can be tested for.”

Hunter’s Hope, Kelly stresses, helps many more children than just those affected by the same disease as his son. It helps all newborns who might carry a disease that doesn’t currently have standard testing.

More recently than his playing career, Kelly has been in the news because of his public battle with squamous cell carcinoma, a cancer of the head and neck. What he experienced while fighting for Hunter readied him for his own fight, he says.

“I guess, for me, when you think about (fighting) for somebody else, or whether you’re doing it for yourself, it’s almost a little bit of the same. And I look to where I am now, and I’m the one who is going through that. I think it was all preparing me for what I’m doing now, and that’s going and making a difference, not only for the men and women that are fighting cancer, whatever type it is, but also for those parents with a special needs child – to never give up, to be able to make a difference; to make sure that you don’t treat (a patient) like they’re dying. To treat them like they’re alive.”

Kelly was declared cancer-free in 2013, and again in 2014 when his condition recurred. By August of 2014, after chemotherapy and radiation treatment, he was completely devoid of the ravenous disease. Still, not even another recurrence could scare the man with the mantra “Kelly Tough.”

“If the good Lord decides tomorrow is my day, there’s one guy that’s going out fighting, but I’m going out with a smile on my face, because I’ve lived a life that certain people would love to have,” Kelly says. “Yeah, I had a professional career, but I also understand that I’ve been able to make a difference for others. When I leave, I know one thing: I’m going to see my son. Every day, I’m one day closer to my little boy called Hunter.”

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