Hunter James Kelly, an eight-year-old boy who battled a fatal nervous system disease and inspired his parents to create the Hunter’s Hope Foundation, died on Aug. 5 of respiratory failure.
The son of Hall of Fame quarterback Jim Kelly and his wife Jill, Hunter was born on Feb. 14, 1997 (his father’s birthday). Four months later, doctors diagnosed him with Globoid-Cell Leukodystrophy, also known as Krabbe Disease, a degenerative disorder of the central and peripheral nervous systems. Krabbe Disease, which has no cure, hinders development of the myelin sheath, a fatty covering that protects the brain’s nerve fibers. One in 100,000 live U.S. births are afflicted with the disease, and approximately 2 million Americans are carriers of the genetic deficiency that causes it.
The prognosis was grim. Medical professionals gave Hunter less than three years to live.
The Kellys responded to this news by establishing the Hunter’s Hope Foundation, an organization dedicated to funding research to identify treatments, therapies and a cure for Krabbe Disease. To date, the foundation has raised more than $6 million, and awarded more than $3.8 million to leukodystrophy and other neurological disease-related research.
Hunter spent most of his life confined to a wheelchair and hooked up to a respirator and feeding tube. With the help of family and specialists, he was eventually able to lift his arms and head. Hunter learned to communicate through a series of facial expressions, including blinking once for “yes” and three times for “I love you.” His favorite pastimes included bowling, swimming, painting, board games and music. According to a statement released by his parents, Hunter was the longest living survivor of infantile Krabbe Disease.
When Jim Kelly was inducted into the Pro Football Hall of Fame in 2002, he ended his acceptance speech with a special acknowledgment to his son: “It has been written throughout my career that toughness is my trademark. Well, the toughest person I’ve ever met in my life is my hero, my soldier, my son, Hunter. I love you, buddy.”
Heroism is in doing your best when you are handed the dirty end of the stick. It has nothing to do with size or age, only with determination.
I wish the best of luck to everyone and i hope everything goes well
i was saddened to read that hunter died my heart goes out to the family just remember that hunter is perfect now in gods house he can run and play and be a perfect boy
To Jim and Jill Kelly,
I just wanted to leave this tribute with you today. Hunter has been in my spirit for the past week or so. I’d lost touch with his story since the first time I saw him as a newborn on TV with his dad during a football game. He touched me so and I never forgot him. In 2000, I gave birth to a son and named him Hunter in honor of your little boy. He will be 8 this year. He has always gotten compliments on his name and I tell them the story of Hunter Kelly and how he inspired me even as an infant. It was not until today that I found out he was no longer with us on this earth. And I was reading his miraculous story. I was so amazed when I saw that his middle name is James for I was never aware of that! My Hunter’s middle name is Jameson…after my deceased dad, James. Jameson means James’ son!