Rare Day In My Life: The Arrival

October 4, 2022

The day has arrived! You wake up early and prepare for a long journey with your stuff piled all around. Then you’re on the road – and your pure excitement is almost too much to handle. Can time please move faster? Instead of repeatedly asking your parents if you are there yet, you pass time by reliving the fun memories from last year’s camp. Who will be returning? Did you remember to pack your Hawaiian shirt and the full-body dinosaur suit you made yourself? These questions keep you busy until you look up and see the wooden sign with bright pink balloons. Then, you smile wide as a wave of glee washes over you. You’ve waited all year, but you’re finally here! Your home away from home. Your isle of promise.

As you pull into Camp Promise, you look out the window at the colorful sea of counselors chanting your name. You feel like you can do anything! You meet your counselor and explore your cabin, which is decorated with streamers and a hand-drawn sign full of glitter with your name on it. As you hug your parents and say goodbye, you realize this is where you’re meant to be! While you eat lunch with your cabin mates, who will be your close friends by the end of the week, you plan out what activities you don’t want to miss: Roasting marshmallows and singing silly songs as the heat of the campfire warms your heart; Designing your cabin flag while you brainstorm a catchy cabin chant full of corny jokes; Catching a fish as you think of the silliest rumors that will be shared at dinnertime; Eating an ice cream sundae while planning a skit you will perform at the talent show; Hugging a squealing baby pig and grinning from ear to ear as you add “hugged a pig” to the Wall of Firsts. Nothing feels impossible when you have your counselor cheering you on, who you know will also cherish these one-of-a-kind experiences for the rest of their life! The days seem to last forever and ever.

Blink – it’s already the last night. At Camp Promise they always save the best for last – the dance. You put on your fanciest getup and gather outside the dance hall. The doors open wide and the strobe lights illuminate your face. The music starts and you break out some dance moves you just invented. You’ve never been happier than you are now! You’ve made so many friends! You’ve laughed so hard that tears of joy streamed down your face! You tried new things and ventured beyond your comfort zone! When the final song starts, you take in all the feels as everyone rushes to the dance floor. Closing time. Time for you to go now. But your heart will forever hold a place for camp – the isle where dreams come true!

I’ve cherished my memories of Camp Promise to this day. “I can do anything at camp” evolved into “I can do anything I set my mind to in life.” I can find a job! I can advocate for the rare disease community as a Jett Foundation Community Ambassador, Odyssey board member, and Microsoft Most Valued Professional! Every time I say goodbye at camp, I tell everyone to make a promise. A promise to do whatever they can to bring camp wherever they go, so that one day the world will be as accepting and limitless as Camp Promise is. We’re slowly making it happen, and it’s the reason I created this #RareDayInMyLife platform, so we can share our experiences and keep the spirit of Camp Promise alive! Stay tuned for many more posts – there are big things happening and you don’t want to miss it!

Anthony DeVergillo

Anthony DeVergillo is a motivated communication professional with a focus in the rare disease space. He lives with Duchenne muscular dystrophy, a disease that weakens his muscles over time, but he never lets it stop him from advocating for many who live with a rare disease to be fully included in society.

Anthony’s goal for #RareDayInMyLife is to not only share his challenges and experiences with Duchenne, but to allow for others to share their story for the world to read. He hopes that sharing #RareDayInMyLife will better educate the communities around us in order to be more inclusive of people who live with a disability or rare disease.

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