About


Welcome to the NARBE House Blog!
My name is Nancy, and I'm a caregiver alongside my husband Ari for Ben, Ari's younger brother. I created this blog to share my thoughts, tips, and information that may be helpful to our NARBE House community. We cover a little bit of everything here: caregiving, accessibility, assistive technology, family updates, and stories to help you get to know us better.

A Little About NARBE House
NARBE stands for Nancy, Ari, and Ben, our names combined. Ari and I are a married couple, and Ben is Ari's younger brother. Ben has a rare condition called TUBB4A-related leukodystrophy (H-ABC), which has gradually taken away many of his abilities, including walking, talking, and using his hands.


We used to live on opposite sides of the country. During the COVID-19 pandemic, Ari and I traveled the country while I worked as a Traveling Respiratory Therapist, and that journey eventually brought us to New England to visit Ben. After seeing his health deteriorating, we made the decision to stay so we could help oversee his care and advocate for his needs. We renovated a nearby home with all the wheelchair-accessible features and modifications Ben needed.


In 2022, Ben decided to move in with us and chose us to be his full-time caregivers, and that's how we became a unique family, all living under one roof. We also have a dog named Rush, who is very much a beloved part of the family.



Once we got Ben's health stable and his care routines in place, we shifted our focus to bringing more independence back into his life. That led to Ari using AI to help him build custom software tailored to Ben's wants and needs. With no programming background, Ari worked alongside Ben to create something truly powerful: a system that lets Ben type to us, change his own TV shows, and play video games again.



We've been sharing our family's journey and Ben's incredible comeback story ever since. The community we've built has been so supportive, and we continue sharing to raise awareness about inclusion, rare disease, caregiving, and never giving up hope.


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