When Elise Bonsky turned 3, she was diagnosed with a form of leukodystrophy called Alexander disease. Leukodystrophies are a group of rare inherited disorders of the white matter of the brain and spinal cord. They are difficult to recognize and diagnose and do not currently have a cure or many effective therapies. They also receive very little dedicated research funding. That’s why the work underway at Children’s Hospital of Philadelphia’s Leukodystrophy Center is so critical for patients like Elise and their families. At CHOP, Elise has received therapy to manage her symptoms and improve her quality of life while the team continues ongoing research to find new treatments.
Hear more about Elise’s journey, featured on Seeking Solutions with Suzanne.