James and Marilyn Schmiedel live in Pflugerville, TX, with their two children, Maddy and James. Sixteen-year-old Maddy is affected by BLOC1S1 Hypomyelinating Leukodystrophy, for which there is currently no treatment available. Their son, James, is 12 years old. Marilyn advocates for all families affected by a leukodystrophy through her work with the United Leukodystrophy Foundation.

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