How We Adapt Summer Fun For Our Son Living With Duchenne

Every family has summer goals. Ours were always simple: camp, vacations and most importantly have fun! However, like many other families battling a rare disease, when Ethan was diagnosed with Duchenne, we were not sure how he was going to live the fun life we had planned for him. It then became our mission to fulfill those goals and make sure that our boy had all the same experiences as those without Duchenne, only with some adjustments.

First summer goal:  Camp

My husband and I went to day camps and sleep away camps when we were kids. We knew that having Ethan attend camp was a goal of ours. We wanted him to build the same friendships and experiences we had built during those important year. 

After touring various camps, we realized that the regular outdoorsy summer camp would not be an option for our son. After much research, we finally found Discover Camp. After speaking with the director, we immediately knew that this was the right fit for our son. 

This year will be Ethan’s third year at the camp. At Discover camp, he takes classes such as Roblox, cooking, movie making, 3D Minecraft, and escape room. He learns to build model cars. He even plays chess with friends during recess. He gets to pick the classes that are of interest to him! 

All the counselors and staff help Ethan get from class to class and accommodate all of his needs. He makes new friends with similar interests.

Ethan has the same camp friendships and experiences as we did. 

Second goal: Vacations

We are excited to travel again this summer. Thanks to JB keys to DMD , Ethan will be experiencing adaptive sailing. He was lucky enough to experience their adaptive skiing program a couple of years ago. Thanks to these programs and individuals, Ethan’s disability doesn’t stop him from the experiences we want for him.

Third goal: Fun

Living with Duchenne has taught us to cherish every moment. We make sure to celebrate every holiday, attend all birthday parties and invites. We know that nothing can stand in the way of memories and we will have those.