Fighting Krabbe's Disease with Jim Kelly

WebMD Live Events Transcript

Jim Kelly, former Buffalo Bills quarterback and current ESPN golf and sailing commentator, will discuss fighting Krabbe's disease, which affects his son.

The opinions expressed herein are the guests' alone and have not been reviewed by a WebMD physician. If you have questions about your health, you should consult your personal physician. This event is meant for informational purposes only.

Event_Moderator Welcome to WebMD Live. Today we will be discussing "Hunter's Hope" with former Buffalo Bill quarterback Jim Kelly.

Jim Kelly's son Hunter has Krabbes Disease. Krabbes Disease is a genetic disease passed on by both mother and father. It is not determined by gender. Any child conceived by carrier parents has a 1 in 4 chance of being affected; a 1in 4 chance of being a non-carrier; and a 2 in 4 chance of being a carrier. Being a carrier does not affect the child's functioning and can only be detected through genetic testing of the DNA code. The disease itself is an error in the genes that does not allow for proper nerve development in the brain. Each nerve in the body is surrounded by a myelin sheath which carries the electrical impulses to every other nerve. In Krabbes Disease, this sheath is not forming correctly, thereby not allowing a full and proper message to be carried to other nerves. Jim and his wife Jill have started Hunters Hope Foundation to raise awareness and funding to research this disease. Jim, welcome to WebMD Live.

Jim_Kelly_Speaker Thank you.

Event_Moderator When did you find out that Hunter had Krabbes Disease?

Jim_Kelly_Speaker We found out close to when he was 4 months of age. At first we thought our son had colic, and my mother in law told my wife Jill that she's had colic before, and this did not seem like it. So we took our son to our pediatrician, and he thought at first it was cerebral palsy; about the 2 month age. At that time, Hunter became more irritable, stiff, and at that time, we decided to take him to a neurologist, because we felt this couldn't be palsy. At a children's hospital in Buffalo the physician wanted to test him for leukodystrophies, so automatically my wife went home and looked it up on the Internet, and said there was no way our son could have this because it's genetics. So we went back home and really started to know more about it, and said this was no way. Our nightmare came true when we were called into our doctor's office and we were told that through blood tests, our son was diagnosed with Krabbes Disease.

Event_Moderator How is Krabbes Disease diagnosed?

Jim_Kelly_Speaker They had to do a test, and it was done by a Dr. Wanger in Philadelphia.

Event_Moderator Can it be detected before a child is born?

Jim_Kelly_Speaker You can have prenatal testing, and right now I do not think anybody can go in to get tested. We had a daughter born seven months ago, June 24, and we had pre-natal testing prior to her birth. It came back showing her as a carrier, but she doesn't have a disease. We prayed every night that that would the case, and our daughter is healthy.

Event_Moderator How long is the average life span of a child born with Krabbes Disease?

Jim_Kelly_Speaker The average life span is only 14 months. Hunter's already doubled that and is working on 3. He's going on his third birthday this Valentine's... which is also my birthday.

Event_Moderator How many children have Krabbes Disease?

Jim_Kelly_Speaker One in about 100 babies a year, but with Krabbes Disease, it's in a family of leukadystrophies. If we find a cure into what we're searching for, it can cure a lot of other diseases. There's a movie called "Lorenzo's Oil", and that is also a leukodystrophies. If they find and make progress on what they're looking for on Krabbes Disease, this would also help with the other eight diseases in the leukodystrophies family. Almost 100,000 a year are affected with all the different types of leukodystrophies.

Event_Moderator Is there any possible treatment for Krabbes Disease? If so, how costly is it?

Jim_Kelly_Speaker There is no treatment as of right now, but we have set-up a Hunter's Hope foundation with 3 goals in mind; 1. To raise awareness so that mothers, fathers, doctors alike can know about Krabbes leukodystrophies; 2. To raise enough funds through Hunter's Hope to find a treatment. There's nothing right now, and it's all trial and error. A part of that treatment is the cure; we hope that 5 or 10 years down the road, all the work we've been putting through will result in a cure; 3. Through Hunter's we hope to make sure families realize how important their kids are, whether or not they have the disease. We feel that there are so many families and parents that take it for granted that everything is going to be just fine, and that the day that's taken away from you is the day you look back and wish things had been different. It's important to give your child as much love as possible, and that's what we're going through with Hunter right now.