When I was younger and starting to lose muscle strength, I was terrified of the unknown. Thankfully, my parents were very open with me about my diagnosis and explained to me that my muscles worked differently. They even came into my kindergarten class one day and brought a video and children’s book to teach my classmates about my unique muscles. That was very helpful and likely made it easier for my lifelong best friend to initiate the interactions that sparked the beginning of our relationship in elementary school. Of course, I didn’t know the darker realities of my Duchenne, such as my heart and lungs weakening significantly and a shortened lifespan. I was only a child then – my world revolved around playing pretend, snack time, and having fun. I know now it would have ripped apart my reality if my parents had told me absolutely everything back then. But I did find out on my own sometime in middle school. The internet was relatively new at the time and our teachers taught us that it was a powerful research tool. So, I pulled up a search engine and typed in my topic for my first research paper, but I got sidetracked and typed in my diagnosis and had the first major surprise in my life.
“Survival past teenage years is unlikely. No treatments. No cure. Not much hope.” The 2000s internet was full of stark science and dismal research. It wasn’t as hopeful and full of websites of rare disease organizations that provided support and guidance for Duchenne as it is now. That lack of hope devastated me, and it made me sink more inward. I wasn’t depressed or emotional really – I was just full of disbelief and finding myself thinking about what I had read all day. I didn’t have my hope fully restored until I was a junior in high school and was asked to share my story at a Duchenne conference. There I met a lawyer, a music teacher, and a father of two children who all lived with the same disease. They were in their 30s and 40s and relatively healthy and happy. That was the moment of my second life-altering surprise. It was the moment I realized that I had hope for living longer, getting married, and finding a fulfilling career! No website or possible lifespan could define me, bring me down, or tell me how to live my life!
As I approach 30 years old, I no longer dread my birthday or ponder if I have a future. I celebrate it! I cherish every day. Boundaries can be broken. Life is a challenge, but it is beautiful. I am constantly reminded that I can be a part of society. Every day I open my work laptop and love my job. I enjoy every time I find a way to solve a problem for my friends. I may not have found love yet, but I am still happy with my life. I am constantly reminded to be patient and wait for love to happen by watching my favorite YouTube vlog Squirmy & Grubs every week. Grubs – aka Shane Burcaw – never imagined he would find love in his life. In fact, he recently spoke about how he Googled his own diagnosis at a young age, just like I did, and how it took time to be hopeful again. Now, he is married to Hannah, a woman who happened to reach out years before. I now know that even though my surprises earlier in life were difficult, there are surprises that make life meaningful, just like when Shane met Hannah. Just like when my sister told me I’d soon be an uncle. What’s next for me? Don’t tell me – let’s keep it a surprise!
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.