We are the Schmiedels from Texas. Maddy has a recently identified Leukodystrophy called BLOCS1 Hypomyelinating Leukodystrophy. Children’s Hospital of Philadelphia (CHOP) is researching the BLOC1S1 gene they believe is causing her disease. We’re excited to finally have an answer. Marilyn is a board member with the United Leukodystrophy Foundation (ULF) and dad and little brother are Maddy’s biggest fans. Outside of therapies and appointments, she loves riding horses, listening to Taylor Swift, and swimming in the ocean. We are so thankful for this community.