Leukodystrophy Center Patient Stories

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Weston’s Story: Management of 4H Leukodystrophy


Leukodystrophies are a group of conditions that affect the white matter of the brain, or the myelin sheath, which surrounds and protects the nerve cells in the brain and spinal cord and assists with transmission of messages between cells.

Natalie’s Story: Novel Treatment of Aicardi Goutieres Syndrome

Natalie Treatment of Aicardi Goutieres Syndrome Leukodystrophy

Natalie could walk, talk, and was ahead of all milestones for her age. Then, when she was 18 months old, her parents, Nicole and Patrick, noticed her lifting her big toes off the ground when she walked, as though she had a splinter or cut on the bottom of her foot.

Leukodystrophy: Chloe’s Story

Chloe with mom lying on blanket in the grass

After years of searching, Chloe’s family found support at Children’s Hospital of Philadelphia, where doctors identified the cause of her rare form of leukodystrophy.