The Leukodystrophy Care Network (LCN) is focused on ensuring that all children affected by Leukodystrophies receive the proactive and comprehensive medical care they deserve. By continually improving the standard of care for Leukodystrophies, increasing the accessibility of this care, and providing information and resources for families, we are making strides to accomplish our ultimate goal — for all individuals affected by Leukodystrophies to have the best quality of life possible.

Below, our families share how the LCN has impacted their family and why the LCN is important to them.  If you would like to share a Story of Hope, please contact us.



The Wallace Family

Jackson, Krabbe Leukodystrophy

Jackson was a thriving baby boy for the first five months of his life. He was at the top of the charts in height and weight, hitting all of his developmental milestones on time or early, and was an all-around cheerful baby boy. At the five month mark…

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The Webb Family

Duke University Hospital – Mabry Kate and Owen, Krabbe Leukodystrophy

To tell the story of sweet Owen, we must first start with the story of his sister, Mabry Kate. Mabry Kate was born seemingly happy and healthy on March 13, 2014. She was…

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The McIntyre Family

Bethany, Metachromatic Leukodystrophy

Bethany, the seventh child of David and Lindey McIntyre, was born in London, Canada on April 1st, 1993.  Bethany was born as normal as her brothers and sisters and her early life saw steady development, obtaining the usual milestones.

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