Evan (bottom right) pictured with his family.

Evan (bottom right) pictured with his family.


Fundraising for an Accessible Van

Evan, 15 this past New Year’s eve, a chef, artist, daredevil, musician, comedian and dancer, was diagnosed with Duchenne at age 4. Duchenne is backwards of everything you know to happen in the course of lifetime. It has slowly taken away his ability to play the drums and piano, to cook and create dishes, to dance and to be a dare devil on a skateboard, on a boogie board… even on a water slide. However, Evan rarely looks back. He just keeps evolving and looking forward to what he can do and is a happy young man. He paints and he’s really good. He sells prints of his paintings on line to earn his spending money.

Duchenne is a catastrophic muscle wasting disease. It is 100% fatal, on average by late teens to mid twenties. We have strived through out Evan’s life to raise awareness and funding to cure and treat Duchenne. Most our energy has been focused on making his life amazing.

During the past year, Evan lost his ability to walk. We desperately need a handicapped accessible van. Traveling with Evan is difficult on all of us. It is most difficult for Evan because he often gets hurt in the process of being lifted from his scooter to our vehicle. He also suffers embarrassment in front of his school mates as they see him carried out of the car and placed in his scooter . Evan is currently transferred by his father and older brother. However, Evan’s brother will be going away to college next year and his father is often unable to lift because of recurring back problems.

Currently, Evan is using a scooter mobility device but he hopes to have power chair soon. An accessible van is essential for transporting Evan. It would give him the ability to safely enter a vehicle and afford him dignity in front of his peers.

Thank you for your consideration!

Evan has met his goal; thank you to everyone who supported his fundraiser!