DMD Updates

Aidan is now twelve, in 7th grade, and while he can't play sports, walk long distances, get up off the floor, or go up stairs, he's not in a chair full time. He uses his electric scooter to get around school or other places where there's a lot of required walking. He uses the elevator that the trust funds provided in his house to go between floors.

He's also participating in a clinical trial at Seattle Children's Hospital for the drug Etiplersen. We think it's helping keeping him as strong as possible.

He takes many pills each day with no fuss. While he gets frustrated at his limitations sometimes, he understands that there's no current, permanent "fix" and that's why we're all working so hard to raise money for DMD research. And it's why Mindy is working so hard with other DMD Moms to persuade the FDA to move more efficiently and quickly to approve helpful drugs.

To Aidan's credit, he's also said that while he wished he didn't have DMD, he likes the special things that happen to him because of it - things like his Make-A-Wish trip and the annual Walks and Runs for Aidan. The disease limits him, but does not define him.

Current Research


 

 Aidan Reading
Aidan's Scooter
Aidan's now a speedy driver on his motorized scooter. He uses it to help conserve muscle strength when he's on a field trip, "hiking" accessible trails, at NW Trek, or at places like Friday harbor.
New Scooter Aidan, Scooter, & Two Cougs

At Friday Harbor Lefflers at Friday Harbor

At NW Trek Make A Wish Trip