My name is Ari, and Ben is my younger brother. My wife, Nancy, and I have the honor of being his caregivers.
Ben just hit a milestone that many thought he might never see: he officially turned 30.
Ben lives with an ultra-rare disease called H-ABC. Over the years, it has taken away his ability to walk and speak, but it has never touched his spirit or his smile.
The Big Birthday Wish
For his 30th birthday, Ben has one big wish: to get out and experience the world. He wants to reunite with his best friend, visit family, and explore new places. For Ben, travel isn't about luxury. It's about getting somewhere he's never been before and feeling the sun on his face in a new place.
Inspiring Hope and Raising Awareness
Ben and our family are on a mission to raise awareness for TUBB4A-related leukodystrophy while inspiring others to make the most of what they have. Through Ben's incredible story of resilience and hope, we want to show that caregiving can bring deep meaning and purpose to life. We also hope to highlight the importance of inclusion and accessibility for people with disabilities, and encourage everyone to find strength and possibility in the face of adversity.
The Reality of the Road
Getting Ben where he needs to go is a major undertaking. Between his inability to safely use a standard car or airplane seat and the several pieces of medical equipment he relies on, traditional travel just isn’t an option for us. A full-size accessible van is the best way we can feasibly—and safely—get him and his gear on the road. We want to give Ben the opportunity to experience travel while he is still healthy enough to enjoy it.
How Your Support Helps
We are reaching out to our community to help Ben travel. As Ben’s brother and the one organizing his care, I’ll be managing these donations to cover:
- The Van & The Road: Keeping the accessible van maintained and ready for travel, plus the cost of gas and tolls to get Ben where he’s going.
- A Safe Place to Stay: Booking accessible hotels or rentals that have the roll-in showers and space Ben needs to stay comfortable.
- Experiences & Extras: Admission to the parks, zoos, and shows on Ben’s bucket list, plus any other little things he might need while we’re on the move.
- The 24/7 Care Team: Since Ben needs constant support, these funds help cover food and travel expenses for Nancy and me as his caregivers, so we can be by his side every second of the trip.
- Home Base & Care Continuity: Ben thrives in a familiar, stable environment, and our home is the foundation of his care. Supporting his adventures means keeping our home base secure, so no matter where we go, he always has a safe, accessible, and familiar place to return to.
I am personally overseeing every donation to ensure it supports Ben's journey.
We can’t wait to share the photos and videos of the adventures you are making possible!
Thank you for being part of Ben’s life and making his 30th year his best one yet!
