Giving Him the Accessibility He Deserves
Ethan Agri is a curious, thoughtful 12-year-old with a deep love for science, nature, and understanding how the world works. He lives with Duchenne muscular dystrophy and level two autism, yet his kindness, compassion, and eagerness to learn shine through every challenge he faces.
Duchenne is a progressive neuromuscular disorder that gradually weakens muscles over time. For Ethan, walking has become increasingly difficult, and he now relies on both a manual wheelchair and a power wheelchair for mobility. While his power chair gives him the independence and support he needs, it has also created one of the family’s biggest barriers.
Ethan’s power wheelchair cannot be transported in his mom’s current vehicle. As a result, it must remain at school.
This means that outside of school hours, Ethan is unable to use the mobility device that best supports him. Doctor appointments, therapy visits, family outings, and even simple activities become physically exhausting, unsafe, or impossible.
Ethan’s mom, Melissa, is a Duchenne carrier. She works tirelessly to ensure both Ethan and his older sister, Lianna, feel supported as they navigate life with a diagnosis that affects the entire family. Helping her children cope emotionally while managing the physical realities of Duchenne is a daily balancing act.
Transportation challenges have limited Ethan’s independence at a critical time in his development. Without access to his power wheelchair outside of school:
- Community participation is restricted.
- Medical appointments are harder to attend and more physically demanding.
- Social and enrichment opportunities are limited.
- Ethan’s confidence and emotional well-being are impacted.
An accessible vehicle would change everything.
With a wheelchair-accessible van, Ethan would be able to use his power chair wherever he goes. He could safely attend medical and therapy appointments, visit family, explore the outdoors he loves, and engage more fully with his community. It would also reduce physical strain on caregivers and open the door to a safer, more accessible daily routine.
The family currently lives in a second-floor apartment, which adds another layer of difficulty to Ethan’s mobility and safety. Having an accessible vehicle would not only provide immediate relief but could also help the family explore more accessible housing options in the future.
Through Jett Foundation’s Accessible Vehicle Fund, Ethan and his family are working to raise half or more of the cost of an accessible vehicle. Once that goal is met, Jett Foundation will step in to cover the remaining costs and coordinate the purchase and delivery of a vehicle that meets Ethan’s needs.
Your support helps give Ethan access to independence, opportunity, and the world he is so eager to explore. Please consider supporting their goal with a donation below!
All donations to Jett Foundation are tax-deductible to the extent allowed under applicable law and is an unrestricted contribution to the Jett Giving Fund. The family is working to raise half the funds needed for their van or more; when they reach their goal, Jett Foundation will cover the remaining costs and coordinate purchase and delivery of the vehicle.
