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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!

 

Hope for Life Landing Page Graphic

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.

 

Additional Information for Families

Photo for Link to Mays WebsiteFamily Resource Guide - 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. Download your Family Resource Guide.

Caring 4 Krabbe Kids - An online resource guide for Krabbe & Leukodsytrophy families.