﻿ Krabbe's Disease - MedicineNet - Health and Medical Information Produced by Doctors

Krabbe's Disease (cont.)

Event_Moderator What past Hunter's Hope events are you most proud of?

Jim_Kelly_Speaker We've had so many. One we've had before, but not this year, is one in New York City at the All-Star Cafe. We got people like Wayne Gretzky, James Caan, Dan Marino, Brett Favre, Boomer Esiason, Donald Trump, Troy Aikman, and Steve Young. We had this each and every year up until this year, because there's no bye week in between the Super Bowl. We also have one that's coming this year on April 29th, 30th, and May 1st. It's Hunter's Hope Celebrity Golf and Fishing Tournament in Miami, Florida. I went the University of Florida, and my college roommate Mark Rush, wanted to do something for me and my son, so he set-up a tournament. It's going to be in Miami, at the Loews Hotel in South Beach. There's also fishing out of Ford Lauderdale. Also, November 17th, of the year 2000, we're having a big Hunter's Hope Ball. It's going to be one of our major events. People that have already said they're going to participate are Meat Loaf and Bruce Hornsby. We're in contact with Big Bad Voodoo Daddy, plus a number of other individuals I've met over the years, and we're contacting them. But that's going to be a big event, and we wanted people to know well in advance.

Event_Moderator Is there anyone you look to for inspiration? Can you offer any advice to parents who are in similar situations?

Jim_Kelly_Speaker As far as advice, it's hard right now. I think my wife and I get our strength from each other, from her mother, and from the good Lord above. That's how we get most of our strength. We pray everyday that things work out. At the beginning I was always told that special children are for special parents. Everybody kept telling me that this was meant to be at the beginning, and that's hard to hear, but it didn't take me long to realize that our son is here for a reason, and realize every day that we're blessed to have a child like this. At times it's very difficult. Everyday is not like a walk in the park, but we have our faith, and we continue to keep our faith. The thing I can say to everybody is to take one day at a time and try to get a break once in a while.

Event_Moderator At this stage is there any prenatal care that can enhance the chances of survival of a baby with Krabbes Disease?

Jim_Kelly_Speaker No, not right now. That's one of the things they're working on, and we continue to work on through Hunter's Hope. It's the biggest fund raising mechanism for leukodystrophies. There's a group called ULF, the United leukodystrophies Foundation, and they are trying to do things too, but Hunter's Hope is the organization that's given out lots of grants. We all try to help each other, but Hunter's Hope is without a doubt the biggest organization doing things.

As time goes on, there'll be different things we'll try to accomplish; hopefully prenatal testing and treatment, helping families. There's a big long list of things we'd like to do, but you gotta start somewhere. So far, so good.

larry_bird_WebMD Did your son's disease ever distract you enough to hurt your performance during football season?

Jim_Kelly_Speaker The year I signed up to play for the Bills in 86. After I retired, two months later, my mother became very ill. It was almost like it was meant to be, so my father could take care of my mother. I retired from football in January 1997, and I announced it January 31st. Within two months after my son's birth on February 14th, 1997, he was diagnosed with the disease. It was kind of interesting how it all flowed -- I retired from football, and my son was born. It didn't affect me, but it was almost like it was meant to be so I'd be there for my wife and son.

Al_Pavy_WebMD What progress is being made in finding a cure?

Jim_Kelly_Speaker We've given out our first set of grants. They're working on gene therapy. We gave grants out to a total of eight doctors across the country; Australia, Europe, and six or seven in the US, so it's not centrally located here in North America. This is all across the world. There are babies born with this disease and leukodystrophies. We hope that through what we're trying to accomplish, things will work out for a cure.

Event_Moderator Are any Leukodystrophies curable?

Jim_Kelly_Speaker Not that I know of; again, my main focus has been on Krabbes leukodystrophies. I know some about some of them, but not about all of them enough to comment on them.

Event_Moderator How long has there been research into Krabbes Disease? Is it a recent discovery?

Jim_Kelly_Speaker It's very new, the way they're going about it right now. Doctor Wanger has been doing this for close to 30 years, and he's been working on it by himself. But the most extensive work has been done in the last 2 years, since Hunter's Hope has been founded. We will continue to do more and more.

dusty11_WebMD How have your teammates responded to your cause?

Jim_Kelly_Speaker They've rallied around me as far as coming to all the fundraisers, pitching in, doing different things. Whenever I've called on Dan Marino, Brett Favre, Troy Aikman or Steve Young to help with my foundation, Kelly for Kid's, they've always come to the event, more so now than before because before it helped out. But now it's about a family member, so everyone seems to help out. Especially with people like Boomer Esiason with his son, and Doug Flutie with his autistic son, so many people have come to my aid and it makes you feel good.

Event_Moderator Did you pattern Hunter's Hope after any other foundations dedicated to raising money for disease research?

Jim_Kelly_Speaker No, not really. There's a lot of people out there that have their own pet charities. We didn't pattern ourselves after anybody's. We realized what we wanted to accomplish, what had to be done, and we wanted to do it first class. We wanted to affect not just the doctors and people out there, but families in general. Hunter's Hope, yes, we're out there to find a cure and treatment, but also as I said before, for families to realize how important their own children are and that they never take it for granted that everything's going to be fine.

