Ben Rosenberg, a vibrant 28-year-old with an unbreakable spirit, was diagnosed in the summer of 2024 with TUBB4a-related Leukodystrophy after a lifetime of uncertainty. This rare neurological condition affects his movement, speech, and balance, but Ben embraces life with a philosophy that inspires everyone around him: "Stay joyful and do the best you can with what you got."
Ben’s passions light up his world. He loves the color red, Spider-Man, and Dragon Ball Z—especially the character Goku, whose resilience and determination reflect Ben’s own inspiring journey. Comedy in all its forms brings him immense joy, from stand-up shows to funny movies and TV series.
During the COVID-19 pandemic, Ben faced reduced resources and limited support, prompting his older brother Ari and his wife Nancy to step in. Nancy, a respiratory therapist, and Ari, a dedicated advocate for Ben’s well-being, decided to move closer after spending a few years in New England. They offered to become Ben’s full-time caregivers, but Ben expressed his desire to gain more independence and take steps toward a life of greater autonomy while still benefiting from their unwavering support.
Ari and Nancy worked closely with Ben to create a caregiving regimen tailored to his unique needs, allowing him to thrive in his circumstances. They invested time learning the intricacies of caring for someone with specialized needs, ensuring Ben’s daily life is structured, fulfilling, and enriched with activities he loves.
Ben now thrives with this personalized approach, spending his time engaged in meaningful experiences. He accompanies Ari and Nancy to the gym, enjoying his role as their companion while people-watching. He also loves attending comedy shows, discovering new TV series, playing board games like Monopoly and The Game of Life, and sharing reading practice sessions with his dad every few days.
Ben’s innovative communication devices allow him to interact with audiences on Ari’s Twitch channel, where his infectious laughter and vibrant personality inspire viewers. Together, Ari and Nancy amplify Ben’s message of resilience and joy, raising awareness about leukodystrophy while encouraging others to embrace life with gratitude and determination.
Ben continues to receive specialized care from a leukodystrophy expert in Boston and local providers focused on his quality of life. With his family’s support and his determination to live joyfully, Ben proves every day that happiness is a choice. His love for his favorite heroes, especially Goku, and his unwavering positivity remind everyone he meets that, even in the face of adversity, life is good.
Ari, a filmmaker, incorporates Ben’s story into their creative work. The content they share on social media and Twitch streams not only spreads awareness and positivity but also contributes to a long-form documentary about Ben’s life. This documentary aims to celebrate Ben’s journey, resilience, and the power of family, inspiring countless others to find joy and strength in their own lives.
Check out Ben's instagram account: https://www.instagram.com/beaminbenny/
Ben, Ari and Nancy