It has been 20 years since we first heard the word Leukodystrophy (luke – o – dis – trophy). At first, that word meant one thing – a death sentence for our one and only son, Hunter (2/14/97 – 8/5/05).
Over time and by God’s grace, the Lord has healed our hearts and helped to change our perspective. He used Hunter’s perseverance, bravery, and humility to show us what it truly means to live.
Leukodystrophies are a group of devastating disorders that affect the white matter of the brain. Leukodystrophies have no cure and are fatal. But, they are all treatable.
For Hunter, there was no roadmap or guide to tell us what to anticipate or how to maximize his health and comfort. We were lost.
Throughout the last 20 years we’ve forged a path for research, awareness and support for children and families affected by Leukodystrophies. Now, we’re using this same passion to revolutionize the medical care of children affected by these diseases through the Leukodystrophy Care Network (LCN).
Medical providers and affected families are linking arms in order to ensure the best possible level of medical care for the children. Throughout 2017, monumental progress has been made…
Please take a moment to watch “We Are the Families…” – a perfect representation of the heart of the LCN – to give our children the dignity, hope, and medical care they deserve.
We need your help to get there…
Jim, Jill, Erin and Camryn Kelly