Ben’s Story
Ben with Ari & Nancy
Ben, a vibrant 29-year-old living with TUBB4A-related leukodystrophy, a rare neurological condition that affects his movement, speech, and balance. After a lifetime of unanswered questions, Ben finally received his diagnosis in the summer of 2024. Despite the challenges, his spirit remains unshaken. He lives by a simple and powerful motto:
“Stay joyful and do the best you can with what you got.”
Ben’s world is full of the things that make him smile—the color red, Spider-Man, Dragon Ball Z (especially Goku), and all things funny. Comedy, whether it’s stand-up, movies, or TV shows, is one of his greatest joys. His humor and heart shine through in everything he does.
When the COVID-19 pandemic cut off access to many of Ben’s support services, his older brother Ari and sister-in-law Nancy—a respiratory therapist—moved back to become his full-time caregivers.
But Ben had a vision for his life: not just support, but independence and meaning.
Together, they created a care routine built around Ben’s passions and needs. Whether it’s tagging along to the gym, people-watching at the park, visiting the zoo, or playing board games like Monopoly and The Game of Life, Ben stays active and connected. He also enjoys discovering new shows and practicing reading with his dad.
A major turning point came when Ari developed a custom communication and entertainment system just for Ben. This tool gives him more independence—allowing him to choose his own shows, play games and trivia, and express himself through a predictive text keyboard. Through this system, Ben shares his personality with the world via NARBE House and his personal page, Beamin Benny. His laughter and outlook have inspired thousands.
Ari, a filmmaker, documents Ben’s life through storytelling, livestreams, and a long-form documentary currently in progress. What began as a personal mission has grown into a wider effort to support and connect with other families affected by TUBB4A variants, especially H-ABC (Hypomyelination with Atrophy of the Basal Ganglia and Cerebellum).
As one of the oldest known individuals living with H-ABC, Ben’s story is uniquely powerful. It offers hope, perspective, and connection to families just starting this journey. Ari and Nancy continue to collaborate with others in the H-ABC community—sharing resources, building community, and reminding every family that they’re not alone.