I was devastated to learn that a major fire broke out at my favorite childhood place, The Hole in the Wall Gang Camp, the night of February 12, 2021. A row of iconic buildings were lost to the flames, places where thousands of campers like myself spent hours discovering new passions and hobbies. Though nothing…
Category: Life & Family
Letter to Loved Ones
Dear friends and family, I know it may be difficult for you to see what I’m going through, whether it’s through my personal posts or updates when I’m not doing well. I understand if you feel overwhelmed and intimidated at times. You may have never known someone as medically complex as me before. Maybe you’re not sure what…
Filming for CNN!
Throughout my youth I was very self-conscious, tentative, and reserved. My insecurities were greatly heightened by the progression of my disease, FOP, but I hid a lot of what I went through from anyone outside of my immediate family. It was too intimidating to imagine opening up about my struggles and sharing my perspectives on life with…
Spring/Summer Update
The past year has been filled with amazing opportunities, new experiences, challenging realizations, and unexpected setbacks. I’ve had wonderful days surrounded by friends as well as very difficult days due to FOP flare-ups. I haven’t shared much about my personal life in awhile, so I wanted to finally write about some of the things that have…
Summer/Fall Update
My last blog post was in late May, about a month after a very sudden FOP flare-up began in my jaw. In just three months I went from having over one inch of jaw mobility to less than one centimeter. This progression affected many aspects of my life — primarily my diet, but also talking…