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Is your child newly diagosed with Krabbe or another Leukodystrophy?

You are NOT alone...

Hope for Life

Kelly Family Picture - Hunter Playing Piano with Frame

"Those of us who knew Hunter will tell you that he changed us in profound ways. The grass somehow appeared greener, and the array of beauty that colors our world and the intricate details of creation became more vibrant. Simple things we were usually too busy to appreciate filled us with gratitude because, incredibly, God used the simplicity of the common to show us how uncommon simple things really are.

Hunter loved life...all of it. His suffering didn't take away from his ability to enjoy life; it only made him enjoy what he could that much more." ~ Excerpt from 'Without a Word', Chapter 8, 'Hunter at One and Two'

Photo: Hunter Kelly at age four playing his piano in his special stander. Hunter loved music!

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Visit Hunter Ages 1 - 7 for more photos and information about the fun activities that
Hunter did and that your child can do.
Photos: Above Left - Hunter with his mom and dad playing one of his favorite games.  Middle - Hunter age three petting his favorite horse Bambi with his Grammie. Hunter loved horses! Right - Hunter with his sister Camryn writing his name in shaving cream.

Although Krabbe and other Leukodystrophies are devastating diseases, affected children are capable of living well beyond the disease reported life expectancy. Their lives can be filled with joy and fun activities!  Through aggressive intervention, these children are defying the odds and the expectations placed upon them.  Each child affected by Krabbe or another Leukodystrophies is a unique individual, full of potential and life.

Hope for Life is a special program intended to encourage parents of children affected by Krabbe and other Leukodystrophies to pursue the best care and opportunities available for as full a life as possible for your child.

Whether your child is newly diagnosed, or was diagnosed years ago, it is our hope that you will find Hope for Life helpful and enlightening. Above all, it is our prayer that you will believe that there is hope for your child…Hope for Life!

It is impossible to express the amazing life Hunter had, but we are hoping that these stories, photos and videos will give you a glimpse into Hunter's life and the Hope we have for your child's life.


Read this inspiring article about our friend, Johnny, who is affected by Krabbe - John's World: Teen with Rare Disease Doesn't Give Up.


Additional Information & Partnership Programs for Families

From a glossary of new words and terms that can first seem overwhelming, to helpful tips for caring for your Krabbe or Leukodystrophy child, to a list of  helpful reading resources, the Hope for Life Family Resource Guide has input from other Leukodystrophy families, medical experts, and more.
Caring for Krabbe Kids Logo CARING 4 KRABBE KIDS
Written by the parents of a Krabbe child, Caring for Krabbe Kids is an online resource guide for Krabbe families. The website's mission is to obtain and distribute knowledge acquired by families caring for Krabbe children in order to serve as a source of information and support to other families with Krabbe children -- especially those who are newly diagnosed.
Judson's Legacy Logo_Updated 2014   JUDSON'S LEGACY
A ministry of faith and hope in suffering.


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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

Kelly Family Story
Hunter's Hope Team

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
State and Federal Info
Take Action
Families Taking Action
Supplemental NBS
Why NBS?


Family Care

Wall of Fame
Affected Family Registration
Hope for Life
Family & Medical Symposium
Hunter's Homes
Equipment & Supply Exchange
Ralph C. Wilson Jr. Wish Gift


Get Involved

The Kelly Tough
Every Score
Dine Out for Hope
Special Events & Campaigns
Hunter's Day of Hope & Prayer for Children
Strategic Partners




  6368 West Quaker Street, PO Box 643, Orchard Park, NY 14127 |  (716) 667-1200