Sanfilippo Syndrome is a form of childhood dementia. | Haidyn’s Hope - A Cure for Sanfilippo Syndrome

Life with Sanfilippo Syndrome presents unique challenges to every aspect of life. Families of children with Sanfilippo Syndrome are generously allowing us to share with you how they tackle different aspects of their life to ensure their child has the best care and quality of life. And it couldn’t be more poignant than to launch this series on #RareDiseaseDay. Meet Julie, mom of 21-year-old Alex who has Sanfilippo Syndrome Type B. She is sharing their nighttime routine with Alex, some of the chal

Sanfilippo Syndrome is genetically inherited from both parents. Children are born with the disease after receiving two gene mutations on a specific gene (one mutation from each parent). We had no idea that Sanfilippo Syndrome existed or that Haidyn was sick until she was diagnosed at age 5, after years of a lengthy medical history and unanswered questions. It was not tested for during pregnancy or at birth. She was first diagnosed with autism at age 3, as the brain damage began to cause sensory