The number one thing I wanted to find online when I learned Noah would have L1 Syndrome (also known as x-linked hydrocephalus), was other families who were affected! I will compile stories of other x-linked hydrocephalus families and hopefully this will help you either understand what our L1 families face, or find hope in your new diagnosis.
X-Linked Hydrocephalus Families
click on his photo for his story
These Brothers: Braylon and Carson
click on their photo to visit their story