Sending my sons to MDA Summer Camp feels different this year

A DMD mom explains why she'll be crying happy tears this summer

by Betty Vertin | June 16, 2023

Like many families in the Duchenne muscular dystrophy (DMD) community, we’re preparing to send our three sons with the condition to a weeklong camp for young people with muscular dystrophy.

I’ve spent the week preparing everything for Max, 17, Rowen, 14, and Charlie, 12, to attend the Muscular Dystrophy Association (MDA) Summer Camp. I’ve got laundry going and am prepping their medicines, which, as parents of multiples know, is not fun. Packing 10 days of meds in original containers for three boys involves a couple of hours of prep work.

But I’m also packing their bags, buying extra bug spray and sunscreen, and scouring the house for items to help them celebrate camp themes like glitter day. I can’t wait to see pictures of my boys in their glitter! There is excitement in the air as my sons look forward to attending.

Learning to journey on in the face of disease progression with Duchenne

A bittersweet summer

However, this will be Max’s last year, and that’s hitting me hard. He’ll be a high school senior this fall, but it seems like just yesterday he was 8 years old and attending his first MDA Summer Camp.

His first year was memorable for a couple reasons. For one, it seemed like almost as soon as Max was diagnosed with DMD, people started telling me about the camp, how great it was, and how much he’d love it. I remember thinking those people were crazy; there was no way I’d send my little boy away for an entire week after we’d just learned about this scary disease.

It took some persuading for me to want to take him to camp, but the second reason it was memorable reinforced my original thoughts. During his first year at camp, I was invited to come for Legacy Day and bring Rowen and Charlie, too, so they could see what camp was like and feel more prepared when it was their turn to attend.

Max was glad to see us. We stayed for a water fight, and the boys had a lot of fun. But when it was time to leave, Max cried and cried and begged to come home with us. His counselor pulled him away from me as he screamed my name. I was miserable the rest of the week, worrying about him and hating myself for leaving him there. But when we picked him up, he’d had the best week and has returned every year possible.

Max loves being with kids who are similar to him, and he greatly enjoys the support and encouragement he receives from counselors and staff. And with his flair for music and theater, he loves the talent show and dance held on the final night.

What Max probably liked least about the COVID-19 pandemic was that camp was canceled two years in a row. In fact, since COVID-19 hit, our home state, Nebraska, has offered only virtual camp. But he loves the experience so much that we now drive six hours to our neighboring state of Iowa so he can attend in person. Rowen and Charlie enjoy camp, too, but not as much as Max. They wanted to skip it this summer, but because it’s Max’s last opportunity to go, my husband and I made it mandatory that they attend with him.

But now that their departure is almost here, I’m on the brink of tears. For all the ways Max differs from his peers, I realize he’ll face just as many lasts during his senior year. Thus, Mom is just as emotional as he is.

I’m so happy Max has loved camp, but I’m sad it’s ending for him. I’ll be the one crying this year, but they’ll be happy tears. I’m now one of the people who tell parents of newly diagnosed children about how great MDA Summer Camp is and how much their sons will love it.

Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.

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About the Author

Betty Vertin Betty Vertin is a mother and writer living in rural Hastings, Nebraska, with her husband and seven children. Betty is a caregiver to three sons, Max, Rowen, and Charlie. Her oldest was diagnosed with Duchenne muscular dystrophy in 2010 at 4 years old. The other boys were diagnosed with the same in the following year. Although Duchenne occasionally crashes the party, it has not kept her large family from celebrating and enjoying life. She writes her column in hopes of sharing her family’s experiences with others on a similar journey.