Ethan has a way of changing the feel of a room. He’s funny, quick-witted, brave, and openly loving with the people around him. He’s also a big classic rock-and-roll fan. Last spring, he celebrated his birthday month by seeing one of his favorite bands at Soldier Field, surrounded by tens of thousands of other fans.

For his family, moments like that aren’t just special. They’re proof of something bigger: mobility is about access to life.

Ethan lives with Giant Axonal Neuropathy (GAN), a rare, neurodegenerative disease. His parents first noticed something wasn’t quite right when he was about two-and-a-half years old. He walked with a different gait, struggled to keep up with other kids, and tripped more often than expected. Early testing ruled out one suspected condition, but answers didn’t come quickly. They were told it was “too early” to know more — a difficult place to live when you know something is wrong.

When Ethan was around six, a specialist recognized the signs of GAN, something he had only seen once before decades earlier. The diagnosis was later confirmed through a nerve biopsy at the Mayo Clinic. GAN is so rare that, to his mom Gelse’s knowledge, there are only about 100 known cases worldwide.

With rarity comes a hard truth: there is no clear roadmap. Families often become caregivers, advocates, researchers, and educators all at once, sometimes even teaching medical professionals about a condition they’ve never encountered.

As GAN progressed, Ethan’s needs changed. He stopped walking around at age ten and began using a power wheelchair. That shift affects everything: school, appointments, friendships, travel, and the ability to say “yes” to being out in the world. A power chair also brings practical realities: weight, space, and the need for accessible transportation.

An accessible vehicle became the bridge between home and community. With it, Ethan’s world expanded dramatically. His family made it a priority to build memories while travel was still possible, and over the years, Ethan has visited 42 states, including cross-country road trips that created lasting memories.

Mobility made those experiences possible; not just the destinations, but the independence and belonging that come with being able to participate.

That doesn’t mean it’s easy. Mobility equipment and accessible vehicles are complex systems with moving parts and ongoing maintenance needs. When something fails, it isn’t just inconvenient. It can feel urgent because it impacts safety and access in real time. Reliability and preventative maintenance become part of caregiving, not a separate chore.

And caregiving, for a neurodegenerative terminal illness, is both deeply loving and relentlessly demanding.

Gelse later shared what many families hesitate to say out loud: love is what makes care possible, but it doesn’t remove frustration or the emotional weight of the work. In their home, daily life can include personal hygiene routines, dressing, diaper changes, g-tube feedings that take hours, medication schedules, wound care and prevention, respiratory therapies, suctioning through his trach, physical therapy, eye care, equipment upkeep, and the constant work of keeping Ethan emotionally supported and connected to the world.

On top of that is the administrative burden: medical billing, insurance denials, hospital stays, waiver programs, durable medical equipment logistics, transportation coordination, and navigating accessibility in public spaces. Rare disease families often live in a state of continuous learning because there isn’t a comprehensive manual, and every new challenge requires new knowledge.

That reality is one reason Rare Disease Day matters. Awareness isn’t just symbolic. It helps communities understand that rare conditions are real and often under-resourced. It reminds us that accessibility and support are not extras — they are what allow people to participate in everyday life.

Ethan’s journey has also inspired something beyond his own experience.

Gelse and her family founded All In for Ethan, a nonprofit organization dedicated to bringing moments of joy to children living with Giant Axonal Neuropathy. Anyone can make a donation through their website at www.allinforethan.org to make a direct impact for these kids.

They saw a gap: so much of these children’s lives revolve around doctors and hospital visits. Where was the fun?

Through donations, All In for Ethan provides items and support that enhance quality of life, often something as simple yet meaningful as an iPad. For many children with complex medical needs, technology becomes a window to the world: a way to learn, connect, communicate, and experience things they physically cannot access. The organization has supported families not only locally but internationally, offering small but powerful reminders that they are not alone.

It’s a reflection of how Ethan lives his life — with openness and connection. He has inspired friendships that have endured through hospital stays and surgeries. He has influenced others to pursue careers supporting individuals with special needs. He has shown those around him what resilience and love can look like in practice.

For Rare Disease Day, Ethan’s story reminds us that mobility is bigger than movement. It’s access. It’s inclusion. It’s memory-making. It’s the ability to participate, to travel, to see your favorite band, to build friendships, and to live fully, even when life itself is complicated.

And sometimes, it’s about turning personal hardship into light for someone else.