Tilyn’s Story

My son’s name is Tilyn, and this is our story…

Tilyn was born healthy and grew into a bright bundle of happiness. By the time he turned one, though, I started noticing signs that something wasn’t right. We spent years visiting specialists who offered guesses and temporary solutions, telling me he might just grow out of his delays. But I saw him decline, and deep down, I knew we were missing something serious.

In early 2024, we finally received answers—clonus, autism, and cerebral palsy. It was a devastating blow. We had already been doing therapy, but his condition kept progressing. I was worn down, trying to manage my own autoimmune disease (ankylosing spondylitis) while raising him as a single mom. I just needed someone to tell me what was really going on.

That moment came on July 17, 2024. We met with a new neurologist, and that appointment changed everything. She told me that Tilyn had a rare condition called hypomyelinating leukodystrophy, likely caused by a mutation in the TUBB4A gene. She explained how the disease would slowly interrupt communication between his brain and body—progressively impairing how he moves, speaks, eats, and functions.

My heart shattered.
There is no cure. His body will carry him as long as it can. And we can only manage his quality of life. I freaked out. I felt completely alone, with no idea how to navigate what lay ahead.

But in that darkness, I found a light, the Foundation to Fight H-ABC. They became my lighthouse. I received mental clarity, emotional support, and real-world guidance. Through them, I learned we weren’t starting from scratch. Tilyn was already on a path that others had waited years to find.

Just weeks before we marked the one-year anniversary of his diagnosis, we were invited to attend our first United Leukodystrophy Foundation Conference, thanks to the Foundation to Fight H-ABC. I had hoped to learn more about advocacy and resources—but what I didn’t expect was how deeply healing it would be to be surrounded by people who truly understood what this journey feels like.