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About Us

Kelly Family_Wall of Fame Induction_Soft EdgeHunter’s Hope was established in 1997 by Pro Football Hall of Fame Member and former Buffalo Bills Quarterback, Jim Kelly and his wife Jill, after their infant son, Hunter (2/14/97—8/5/05) was diagnosed with Krabbe Leukodystrophy, an inherited fatal nervous system disease.  When the Kellys welcomed their only son, Hunter, into the world on February 14, 1997— Valentine’s Day and Jim’s birthday— they knew he was destined for something extraordinary. 

At first, Hunter seemed to be a perfectly healthy infant.  However, in the weeks that followed, he grew extremely irritable, and as things grew worse, the Kellys sought answers to relieve their son’s pain.  After an exhaustive battery of tests, a leading pediatric neurologist, Dr. Patricia Duffner, shared the devastating news:

“Your son has been diagnosed with a fatal genetic disease called Krabbe Leukodystrophy.  There is no treatment for the disease and no cure. The average life expectancy for babies diagnosed with infantile Krabbe is fourteen months.  Hunter will probably not live to see his second birthday.  We can help you make your son more comfortable but…

While dealing with Hunter’s diagnosis and arranging for his extreme medical needs, the Kelly family became keenly aware that there were other families dealing with the same devastating news, and they knew there would be more.  With their newfound knowledge of this horrible disease, God ignited a spark of hope in the hearts of Jim and Jill.  Children like Hunter were courageously fighting for every breath and desperately needed help. Something had to be done.

On August 5, 2005, after eight courageous years, Hunter went to heaven. Having far exceeded doctors’ expectations for a child with early infantile Krabbe, Hunter exemplified determination, grace, bravery and joy throughout his brief life. 

The Kelly family’s passion and dedication to carry out the Foundation’s mission remains strong. In Hunter’s honor, the Kellys continue their commitment to provide hope to suffering children and their families.

While Jim and Jill have been blessed with the opportunity to share Hunter’s story and the hope of the Foundation named after their son all over the world, their greatest passion is to bring encouragement and hope to families in the midst of suffering.

 

Jim, Jill and three girls_Soft Edge   Pumpkin face_Soft Edge   Kelly Family Portrait 2013_Soft Edge    Jacque, Jill and Lauren_Soft Edge
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"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to
give you hope and a future." 
Jeremiah 29:11 

 


About Us

Mission
Hunter
Kelly Family Story
Hunter's Hope Team

Research
HJKRI Clinical Center
HJKRI Basic Science Center
Extramaural Research
Medical & Science Symposium
Research Publications
Historical Research

 


Krabbe and Leukodystrophies

About Krabbe
About Leukodystrophies

Newborn Screening
What is NBS?
Krabbe NBS
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Families Taking Action
Supplemental NBS
Why NBS?

 


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Hope for Life
Family & Medical Symposium
Hunter's Homes
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Hunter's Wish Gift
Kaden's Kisses

 


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Jim Kelly's Every Score
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Every Step Walk
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  6368 West Quaker Street, PO Box 643, Orchard Park, NY 14127 |  (716) 667-1200