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 May Family
Dylan, Krabbe Leukodystrophy
We are Phil and Amy May. We have been married 26 years and we have 4 children. Jackson is 21, Conner is 18, Dylan is in heaven (and would be 15 in earthly years) and Sophie is 12. We had 3 wonderful boys, as of October 4, 2004, when our world came crashing down. That day, Dylan was diagnosed with Krabbe Disease, at 8 ½ months old.
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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
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 (MLD)
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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The Malfara Family
Morgan, Aicardi-Goutières Syndrome (AGS), a Leukodystrophy
Morgan’s birth (late 1997) itself was uneventful, and he was born perfect in every way that new parents believe their child to be perfect — 10 fingers and 10 toes, a perfectly formed tiny body, and announcing his arrival with a healthy wail! Although amniocentesis had told us that our unborn child was healthy, seeing him so apparently perfect was a great relief, and our joy was immeasurable.
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