MDA Guest Ambassador Blog: How MDA Summer Camp Shaped Me

Juliette is 17 years old and lives in Florida. She is a senior in high school and will be attending FAU next fall to begin her career in social work. Juliette has Charcot-Marie-Tooth. She uses leg braces and has been an ambulatory wheelchair user since diagnosis. Juliette enjoys being involved in local theater and reading when not hanging out with friends.

Isabelle (8 on left) and Juliette (8 on right)

If you had asked me ten years ago about my disability, seven-year-old me would’ve said “I wish I could trade bodies with anyone else.” Over the years, I have come to realize that I don’t want to trade bodies with anyone. My disability has brought me to the place I am today, to the person I am today, and to the connections I’ve made along the way. I wouldn’t trade all of that for anything in the world. The community my disability has brought me into is something I wish others could experience. I wish everyone could get a taste of the love, acceptance, and beauty that even something painful can bring. I have been lucky enough to get so much more than just a taste of these things through my connection with the neuromuscular disease community. Through walks, volunteer events, and camps I’ve met the strongest and kindest people ever.

Juliette (8 on left) and Auria (9 on right)

MDA Summer Camp was my first exposure to the types of MDA events that were available for me to get involved in. Shortly after receiving my diagnosis with Charcot-Marie-Tooth (CMT), my neurologist suggested to my mom that I needed support groups and camps. This led me to MDA and their summer camp program for youth living with neuromuscular diseases. My local MDA Summer Camp was only three hours from my house. My time at camp changed my life and shaped me as a person. I learned that I had an amazing community to support me and grow with me. I learned so much about myself and my own strengths and passions. I also learned that I could do hard things and overcome challenges. In fact, attending camp itself was my first experience overcoming the fear of the unknown and learning to adjust to new situations to discover that sometimes challenges lead to amazing things.

My very first year at camp, I actually HATED it. I was so homesick, that I left early, calling my mom at 11:00 PM on the last night of the week to come and get me. The week had been intimidating and there had been so many new things to adjust to. Before that, I had never met another kid with a disability, or even any adults with one for that matter. I didn’t know when it was okay to ask for help. It was hard understanding, at age seven, that there could be kids going through what I had and worse. I felt overwhelmed by the experience.

Juliette (far left with purple shirt), Kat (Right of Juliette with red bathing suit), Rachel (in front of Juliette with white sunglasses), Jesse (floating the furthest forward), Gio (far right), Gavin (in dino floatie), and Red (holding Gavin)

The following year my mom asked me if I wanted to try attending camp one more time. Initially I said no… but four months later I was standing three hours away from home once again, watching my mom drive away with tears in my eyes. Little did the girl at the beginning of that week know that it would help her meet so many new people, participate in activities (like the carnival) she would’ve never thought possible, and become the best week of her life… with so many more to come.

Every year thereafter, I spent my days feeling “camp-sick” and longing to be back in my window bunk at camp, spending busy days with my friends and ending each day listening to  the 8:00pm train go by on the nearby railroad tracks. When the COVID-19 pandemic prevented me from attending two of my last four years of camp, I was devastated. It felt like the one thing that had kept me going throughout the year had been stolen from me. The silver lining was that missing those two years of in-person camp made my final two camp years even better. I cherished the little time that I had left before “graduating” and appreciated every moment at camp. I knew that I would miss so many things when my final session ended. There would be no more board game nights, where I wiped the floor with the boys. No more sticky smore’s, which ended up all the way down on the footrest of my wheelchair.  No more carnival days, where even at the age of 17, I felt like an eight-year-old again. And worst of all, no more of the magical home-away-from-home feeling that kept me going even when times were tough. But I also knew that I would leave camp having gained so much.

Juliette (top photo) Juliette (17) and Isabelle (17)

MDA Summer Camp showed me who I wanted to be in life. It taught me how to be understanding and empathetic. It led me to love advocacy work. It made me want to become a Social Worker, determined to continue to give back. The camp grew with me my whole life. At the end of every torturous year in school came a week of relief and love at camp. I will miss it dearly as I build my life with the skills that those wonderful summers taught me – and I will forever carry a deep appreciation for all of the ways that those summers shaped me So, if you get the chance, become a counselor, sign your child up for camp, tell your parent about this amazing opportunity, so that you too can have the opportunity to join the greatest community of your life. A community full of love that will take you on the greatest adventure of all – just make sure you have your seatbelt on.