Finding Answers, Finding Community: Tilyn’s Journey with TUBB4A Leukodystrophy
My name is Miesha Thomas, and I’m the mom of Tilyn Sincere, my 6-year-old son living with TUBB4A Leukodystrophy (H-ABC). Our journey started with years of questions and a misdiagnosis of cerebral palsy. I knew something wasn’t right, he fell often, army-crawled sideways, and missed milestones but answers were slow and inconsistent. In July 2024 we finally received the correct diagnosis: leukodystrophy. Having a name didn’t fix everything, but it gave us a path.
The last year has been intense. Tilyn now uses leg braces, a walker, a wheelchair, and a bath chair. He had surgery for intestinal malrotation and a G-tube placed so he can get the nutrition dystonia robs from him. On top of leukodystrophy, he was also diagnosed this year with juvenile arthritis and ankylosing spondylitis, conditions that were harder to see because autism can mask pain and leukodystrophy function changes. Daily life is a careful balance of mobility, comfort, GI care, and therapy on top of school.
What hurts most is watching slow decline when you love someone with your whole heart. Year to year, the changes are clear. I left my career to keep up with his care, therapies, and my health. While that choice is heavy, God is carrying us. We celebrate small wins—one steady step, one belly laugh—and we do the hard things together.
The United Leukodystrophy Foundation has been a lifeline. ULF Ambassador Michele (Foundation to Fight H-ABC) introduced me to ULF Ambassador Misty, and both have supported us directly. I’ve joined caregiver groups, attended leukodystrophy webinars, and connected with families who “get it.” At the ULF conference. I finally felt seen and equipped with information, community, and practical guidance we could bring home to our care team. ULF turned isolation into connection.
If you’re a family just starting out: trust your mama-bear gut. If you feel there is more going on, don’t let anyone talk you down. You know your child, how they eat, play, communicate, and cope. Keep pushing for answers. And please don’t do it alone. Our community is out here. Lean on us the way others let us lean on them. We are stronger, and louder, together.
What I wish more people understood about leukodystrophy is simple and hard: it’s real, and it’s relentless. Families are grieving and loving at the same time. We need support: mental, emotional, physical, and sometimes financial. Show up for us: listen, include our kids, share our stories, and support organizations like ULF that keep families informed and connected.
I’m committed to advocacy, speaking, sharing on social media, and building bridges so no one has to navigate this alone. My purpose is to fight for the longest, best life possible for my son and to help other parents find their footing faster than I did.
Families like Miesha and Tilyn are the why. Your generosity is the how.