Rare Disease Report

A Journey of Perseverance Takes Jim Kelly Through the Death of His Son

NOVEMBER 15, 2017
Mathew Shanley
A year removed from his retirement from the National Football League (NFL), Pro Football Hall of Famer and former Buffalo Bills quarterback Jim Kelly was blessed by the arrival of Hunter, his second child.

Shortly after his birth, though, Hunter was diagnosed with globoid-cell leukodystrophy – commonly referred to as Krabbe disease. Krabbe disease is a life-threatening lysosomal storage disease characterized by the body’s inability to produce myelin; the protective material that surrounds neuronal axons. The condition commonly leads to progressive damage to the nervous system.

Now, Krabbe can be screened in newborns in most states via heel prick tests and other early detection methods. Eight years after Hunter’s birth, however, he was taken from the Kelly family because of the rare disease. In the video below, Kelly, a cancer survivor, speaks at the Chemotherapy Foundation Symposium Innovative Cancer Therapy for Tomorrow about the death of his only son, and why it changed his life for the better.

Phil Talamo; President, Physicians’ Education Resource, LLC: Jim Kelly is a Pro Football Hall of Fame quarterback, whose hallmark as a player was his toughness on the field. From growing up in a small town in Pennsylvania called East Brady, to facing a career-threatening injury in his college days, to leading a Buffalo Bills team to an unprecedented four straight AFC (American Football Conference) championships, Jim’s toughness has been tested time and time again.

After his NFL retirement, not only did he lose his one and only son Hunter, who was born on Valentine’s Day – which is also his birthday – to Krabbe leukodystrophy, but Jim has also survived not one, but two battles with cancer. Jim speaks about the power of the Four F’s: Faith, Friends, Family, and Fans. He speaks about what it really means to be “Kelly Tough.” His story is called “A Journey of Perseverance.” Without further ado, please help me welcome Jim Kelly.

Jim Kelly: So, my wife gets off the phone, and she says, “I’m going to call the neighbor. You’ve got to wait for the neighbor to come. I’m going. I’ll meet you there.” I go, “Okay.” So, my neighbors come, and my wife is already gone. I leave and I head down to the children’s hospital. I get there, and I go to the emergency room looking for my son. He’s nowhere to be found. I’m like, “Where is my son?” and nobody had any idea what I was talking about. They said, “Well, let me find out, Mr. Kelly, where your son is at.” They call and they come out and they say that he had to be taken to Warsaw Hospital. I go, “Warsaw Hospital?! Where is that?!” They gave me some typical directions, like “You have to go through here,” but my mind is already spinning. I jump in my truck and I’m driving through these backroads, and I’m falling behind a pickup truck and another truck and a cop goes by. We’re speeding through there pretty good.

Of course, just like anybody else, you know you’re speeding, so you look in the mirror. I looked in the mirror and he’s turning around. All of the sudden, I see he puts the lights on, but he’s still a little ways back. I’m thinking, “Okay, he’s going to pull over the guy in front of me. I’m following him. He’s speeding and I’m just following him.” He’s coming up and he pulls right up on my bumper and he puts his siren on. I’m going, “No! Not now! You’ve got to be kidding me!” So, I pull over to the side of the road and he comes up right next to my window and he goes, “Thank God it’s you, Mr. Kelly. We’ve been hunting for you.” He said, “Follow me.” I’m thinking, “Yes!” So, I get behind him and he’s flying down the road with his lights on. We pull into Warsaw Hospital. There are guys out there who flag me down and they offer to park my car for me. I said “No, that’s alright,” but they go “No. You need to get in there now.”

So, I put it in park, and as I go up to the door, I look through the door and I can see a couple of doctors there waiting for me. I walk through the doors, and they’re there and they say, “We’re sorry. Your son is gone.” And I go, “You’ve got to be kidding me.” I went to the wrong hospital and my son passed on five minutes before I got there; I am furious. I’m mad. I mean, I cleared everybody out of the room. I spent, probably, the best time I ever did talking to my son. Physically, he was there, but mentally, he was in Heaven.

As time went on, I knew that something had to change. I drove home with my wife, and we both pretty much thought that our marriage was over. The only one that kept our lives together and kept our marriage together was our son, and now he’s gone. I knew in my mind, and it take me very long after that to realize that if I didn’t change my life, and if I didn’t start treating my wife the way that she needed to be treated, then I wouldn’t be able to walk through my front door and have my two daughters look at their daddy with respect. I wanted to treat my wife the way that she deserved to be treated, and I was never physical or anything, but I just wasn’t a very good husband. I wanted to someday be able to see my son again, and if I continued to live the lifestyle that I was living, I was going to lose everything that I had ever worked my tail off to do. I changed my life. The thing about it is, as I changed my life, and as things went on, I thought that everything would be so much better. I’ve got two beautiful daughters and my son in Heaven, who I will see one of these days, and everything else would be fine. I didn’t realize that the Good Lord, again, had different plans. He still wasn’t done with me yet. For me, it’s just starting.


Kelly wasted little time after Hunter's Krabbe diagnosis and founded the nonprofit organization Hunter’s Hope within a year of his birth.

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.

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