"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
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!
Visit Hunter Ages 1 - 7 for more photos and information about the fun activities that
Hunter did and that your child can do.
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
||HOPE FOR LIFE FAMILY 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.
||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.
A ministry of faith and hope in suffering.