NARBE House Interview
Q. When you first chose to share Ben’s story with the world, what was the strongest emotion you carried with you: fear of being vulnerable, hope for connection, or a sense of responsibility to raise awareness?
We first began documenting Ben’s life in 2016, and that documentary is still ongoing. Everything we do as a family is centered around Ben, and every major decision includes him. At the time, Ben agreed to the documentary because he was not able to tell his own story. This was before he had the custom communication system he uses today.
Our goal was always to tell Ben’s story with his perspective in mind, even as his life and abilities continued to change. A few years ago, we asked Ben again if he wanted to share his story publicly on social media, and he was excited to say yes. We did not have a clear plan for how that would look, but what mattered most was that Ben would be actively involved.
When Ben regained the ability to communicate more fully, beyond simple yes or no responses, it changed everything. Hearing his thoughts, feelings, and opinions in his own words was incredibly meaningful for all of us. In 2024, we also received Ben’s specific diagnosis, which connected us to the TUBB4A-related leukodystrophy and H-ABC communities. At that point, it became clear that sharing our journey was part of a larger purpose. We felt a responsibility to raise awareness, promote inclusion, and show what is possible, even while living with a progressive disease and disability.
Q. When someone hears about TUBB4A-related leukodystrophy for the first time, it can sound distant or clinical. How do you explain Ben’s condition in a way that helps people understand not just the science, but the emotional reality your family lives in every day?
I usually explain it by saying that Ben’s brain knows exactly what he wants to do, but his body can’t carry it out. He is fully aware, thoughtful, funny, and emotionally present, but living in a body that does not cooperate the way he wants it to. Some days are harder than others. He gets tired, and everything can move much more slowly than people realize.
It is also important to understand that TUBB4A-related leukodystrophy looks different in every individual. There are shared traits, but no two journeys are the same. In Ben’s case, he was able to walk and talk as a child, and over time the disease slowly took those abilities away.
The science matters, but what truly defines our daily life is the constant translation between who Ben is and how he can interact with the world. Ben is a person just like anyone else. He loves silly movies, loves telling jokes, and wants to play video games.
Q. Ultra-rare conditions carry quiet battles that no one sees. What is one small, everyday moment maybe during mealtime, sleep, or communication that people would be surprised to learn that it is actually a big part of your daily life?
Communication is probably the biggest one. Every word Ben types takes time, effort, and patience from all of us. He has never been able to have quick back and forth conversations, and until recently, he was not able to type full sentences at all. Ben communicates using two switches to scan and select letters on a keyboard.
This process can be physically and mentally fatiguing, but it is his only reliable way to interact with technology. He is unable to use eye tracking, and many other assistive technologies.
We researched and tried but it simply did not work for him. What may look like a brief pause in our videos is often several minutes of intense concentration, problem solving, and support as Ben works to complete a thought. He has made incredible progress and continues to improve, but those moments of communication shape our entire day.
Q. Sharing your journey online invites both love and scrutiny. As a couple, how has opening your life to Instagram shaped you not just as caregivers, but as partners navigating a deeply emotional path together?
It may surprise some people, but we have not experienced much scrutiny. Negative comments do surface from time to time, but we choose not to engage with them. The support from the community we have built online has been overwhelmingly positive. The encouragement, kindness, and understanding we receive far outweigh the difficult moments.
As a couple, sharing our journey has only strengthened our relationship. We are deeply aligned in why we do this, and everything we share is a team effort. From filming to posting, every video and message reflects a shared purpose and mutual support. Opening our lives publicly has also taught us to slow down and be more intentional, especially when content starts to gain a lot of attention. We are thoughtful about what we share and make a conscious effort to protect our family’s privacy. Any personal details we choose to share are discussed and approved by our entire family.
Q. On the heavier days, when caregiving feels overwhelming emotionally or physically, what helps each of you push through? Is it a moment with Ben, a shared routine, or something you remind yourselves of as a family?
Ben is a huge part of what keeps us going. Even on the hardest days, he still finds ways to laugh, smile, and connect with us. Those moments carry a lot of weight. We also rely on routines and small wins. Sometimes just getting through a day together is enough. We remind ourselves that what we are doing matters, even when it is exhausting. Caregiving has given our family a deep sense of purpose, and that helps us keep moving forward.
Q. There are still so many misunderstandings around disability and rare neurological conditions. What is one misconception you urgently wish people would unlearn?
We wish people would stop assuming that Ben’s physical disability means he understands less. Ben is an adult, but when meeting new people, he is often spoken to like a child or a baby. That assumption is hurtful and inaccurate. Ben has the capacity to understand complex ideas when things are explained clearly and thoughtfully. The limitation is physical communication, not comprehension.
Q. In one of your YouTube videos, you said your story is built on perseverance, optimism, and lots of laughter. Can you share a moment big or small where all of these came together in a way that reminds you why you keep going?
There are moments when Ben is struggling physically, something goes wrong, and then Ari cracks a joke and Ben laughs. Those moments hold everything at once. Perseverance because the situation is difficult, optimism because he continues to engage, and laughter because humor is how we get through it together.
There are so many moments like this in our lives. Ben perseveres through constant challenges brought on by a rare, progressive condition, yet he still finds ways to smile and laugh, even on the hardest days. There have been many times when we end up in the hospital because Ben is not feeling well, and even then, he manages to stay positive. He always finds a way to bounce back.
Ben is full of life and determined to live it on his own terms. We believe he is here to show others that happiness is still possible, even in the face of immense challenges, if you choose to keep going.
Q. As a family, what long-term vision do you hold for NARBE House? Is there a project, foundation, or dream you hope to build for families walking a similar journey with ultra-rare diseases?
Our goal is to keep creating tools and games for Ben and to continue sharing them with others who are looking for more options. That vision led us to start the NARBE Foundation, which exists to make Ben’s tools and games available to families who need accessible, engaging technology.
Over time, we hope to build a large and growing library of games, tools, and resources, along with guides that help families explore new possibilities and create solutions that work for their own situations. We want to show that even as a caregiving family, we still have the capacity to give back. No matter the circumstances, helping others brings us a deep sense of meaning and purpose, and that is what we hope NARBE House continues to represent.
Q. For the parents, siblings, and caregivers out there who are exhausted, scared, or feeling unseen, what message would you share with them from your own lived experience?
You are not weak for feeling tired or overwhelmed. This life carries a lot of weight, and pretending otherwise can be isolating. What you are doing matters deeply, even on the days when it feels invisible. Take help when it is offered, rest when you are able, and give yourself grace. Perfection is not the goal. Showing up, again and again, is. The person you are caring for truly needs you, and the love and effort you give are important.
Q. And finally, to the people who follow you, support Ben, and have become part of your extended family online, what would you like to tell them? What do their messages, presence, and love mean to you on the days when you need hope the most?
We want to thank everyone who has followed our journey and supported Ben along the way. Your messages, encouragement, and kindness mean more than we can ever fully express. Ben truly enjoys us reading him your comments and knowing that his story is reaching people around the world. We genuinely feel like this is only the beginning, and we are excited to see where this journey takes us together.
Bio:
NARBE House is the inspiring story of Nancy, Ari, and Ben—also known as Beamin Benny-a family united by love and innovation. At 29 years old, Ben lives with TUBB4A-related leukodystrophy, known as H-ABC, an ultra-rare neurological condition. Diagnosed specifically in 2024 after years of knowing only that he had a form of leukodystrophy, Ben's life reflects the harsh reality of these rare genetic disorders. Over 50 types of leukodystrophies exist, all disrupting the brain's white matter by damaging myelin-the protective coating that enables efficient nerve signal transmission. When myelin fails to form correctly or deteriorates, brain-body communication collapses, progressively eroding movement, speech, and vital functions.
As a child, Ben walked and talked through intensive therapy, but regression set in. He now relies on a wheelchair, has lost hand use and speech, and became largely "locked in," limited to yes/no responses. With no fine motor control, nystagmus, and low vision, standard assistive tech failed him. Eye-tracking, head-tracking, breath devices, EEG systems, and brain implants were exhaustively researched and tested but proved unreliable. Ben needed software tailored entirely to his abilities, free from constant aid.
Ari, Ben's older brother, and Nancy, his sister-in-law, stepped up as full-time caregivers during the pandemic. Returning home revealed Ben's alarming decline, transforming a brief visit into lifelong commitment. They paused their careers, bought and renovated an accessible nearby home, and invited Ben to stay indefinitely. After trial visits, Ben chose to live with them permanently. Rejecting assistive tech's shortcomings, Ari-with no prior coding experience but aided by AI tools like ChatGPT-built custom software around a simple two-switch system. This hub restored Ben's independence: switching TV channels, selecting shows, and resuming video games sparked his communication drive. As control grew, so did his urge to joke and express himself. The result? In 2025, after over a decade silent, Ben typed full sentences and sent messages independently-a family milestone.
Via NARBE House social media, the trio shares their raw journey, raising leukodystrophy awareness, championing inclusion, and kindling hope. Their tale proves persistence, creativity, and familial devotion can defy limits. Remaining caregivers, they've launched the NARBE Foundation to freely distribute Ben's tools, games, and resources. Their mission empowers others to craft personalized solutions, fostering independence, connection, and joy through tech designed for authentic lives and needs.
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