Words cannot express the joy that our family has experienced, because of our precious son Hunter (02/14/97 – 08/08/05), and the many beautiful Leukodystrophy children and families we have been blessed to meet over the last 20 years.
Little did Jim and I know, when we first heard the word Leukodystrophy, that our son Hunter would forever change our lives, and the lives of so many others.
Leukodystrophy children are miracles and they have so much to teach us. They teach us to love courageously, that we are stronger than we could ever imagine, to celebrate life and to have hope and faith that through God’s grace we are making a difference.
With you by our side we have reached tremendous milestones that seemed impossible 20 years ago. Together, we forged a path for research, awareness and support for children and families affected by Leukodystrophies, established the Leukodystrophy Care Network (LCN) to revolutionize the medical care received by Leukodystrophy patients and advocated for every child to be screened for Krabbe Leukodystrophy at birth throughout the U.S.
Through God we have accomplished so much, BUT we have so much more to do.
Jim, Jill, Erin & Camryn Kelly