Ben’s Story: Rediscovering a Voice After Decades of Silence

By Ari Rosenberg

From the beginning, Ben’s development was different. He was joyful and social, but struggled with walking, speech, and coordination. Doctors suspected leukodystrophy but couldn’t say for sure. For most of his life, Ben carried a vague diagnosis and no clear path forward.

Despite these challenges, Ben grew up in a house full of brothers, crawling to keep up, falling often but always trying. His speech was difficult to understand, and his movement was unpredictable, but his intelligence and sense of humor were crystal clear. He was always fully there—he just didn’t have a reliable way to show it.

As time passed, his condition worsened. He lost his ability to walk. His speech faded. He began choking more during meals, though he continued to eat carefully by mouth. Looking back, a feeding tube should have been considered much earlier, but it never was—and it was never pursued. My father, raising four boys alone, did everything he could. Eventually, he and my mother—though divorced—moved back in together to give Ben more support. It helped. Ben thrived in many ways, even as his body declined.

In 2020, during the pandemic, my wife Nancy (Ben’s sister-in-law) and I—Ari, Ben’s older brother—returned home for Nancy’s work as a traveling Respiratory Therapist in what felt like a strange and fortunate twist of fate. We weren’t planning to stay. But the universe had other ideas. Seeing Ben’s condition in person was shocking. We put our plans on hold and poured ourselves into advocating for him. I began doing physical therapy with him daily. Together, we helped guide the decision to finally pursue a feeding tube when Ben was in his mid-20s—a choice that brought strength back to his body. He began improving.

None of this is anyone’s fault. Ben’s condition has always been rare and poorly understood, and the isolation and disruption of the pandemic made everything exponentially harder. Everyone did the best they could with what they had.

We originally intended to return to our careers on the West Coast—but something told us to stay. Ben wasn’t getting what he needed from the programs meant to support him. So we bought and renovated a home designed specifically for him—open layout, wide doors, fully accessible. He visited a few times, then decided: this is where I want to be.

That’s when we became his full-time caregivers.

Ben gives us so much—his presence, his humor, his perspective—but we knew he also needed something more: access to the world. Traditional communication devices hadn’t worked. Eye-gaze systems were ineffective due to his nystagmus. Touchscreens were no longer an option—his hands had stopped working. Basic head-switch tools existed, but they lacked real engagement. They weren’t fun. They weren’t built for Ben.

So I built one that was.

Using open-source tools and ChatGPT, I developed a fully custom communication and entertainment system that Ben controls with just two head switches. It started as a predictive keyboard and grew into a full platform—text-to-speech, games, streaming, interactive menus, and a baseball simulator where he can hit home runs and talk trash during Twitch streams.

This isn’t just functional—it’s fun. For the first time in over a decade, Ben is communicating again. He tells jokes. He picks his favorite shows. On good swallowing days, he says things like “I want ice cream”—usually dairy-free. His voice is back. His personality comes through in everything he chooses to say.

In 2024, after nearly three decades of uncertainty, we finally got a name: TUBB4A-related leukodystrophy, also known as H-ABC. Ben’s specific variant is c.745 G>A p.(D249N)—a rare mutation that explains the journey we’ve been on all along.

Today, Ben is 29. He’s nonverbal, quadriplegic, and uses a feeding tube—but he is thriving. He participates in livestreams, plays his custom games, interacts with fans using his device, and brings joy to everyone around him. His spirit shines through every word he types.

Through our platform, NARBE House (@NARBEHOUSE), we share Ben’s journey to raise awareness, advocate for rare disease families, and show what’s possible when creativity, love, and technology come together. What started as a pandemic pivot became the most meaningful work of our lives.

Ben’s story is one of resilience, rediscovery, and reinvention. He may not walk or speak the way others do—but he moves people. And now, finally, the world gets to hear him