A Story of Love, Resilience, and Advocacy
My name is Matthew. I’m 36 years old, and my story begins with my beautiful brother, Thomas.
Thomas was born in 1983, and just four years later, he was diagnosed with epilepsy. At the time, our family knew very little about what lay ahead. Years later, after many challenges, we learned that Thomas was living with Lennox-Gastaut Syndrome (LGS), a rare and severe form of epilepsy that brings with it daily struggles, uncertainty, and heartbreak—but also deep lessons in love and resilience.
Living with LGS is not always sunshine and rainbows. Families like ours know all too well that this disorder changes lives in ways most people cannot imagine. But what I’ve also learned is that families and individuals impacted by LGS are some of the strongest fighters I know.
Through Thomas, I’ve witnessed courage in the face of hardship, and I’ve discovered my own role as an advocate. I work every day to raise awareness about LGS and to support those who are struggling. To anyone reading this who feels isolated in their journey: you are not alone.
Together, we can shine a light on LGS, amplify the voices of families, and keep fighting for a future filled with hope.
-Written and submitted by: Thomas’ brother, Matthew
Updated 09/08/25 (KK)