I’ve always dreamed about exploring new places, but in my fantasy explorations, my body is strong and capable and I can do whatever I want. That, however, is not my reality.

After Michael J. Fox was diagnosed with Parkinson’s, I casually commented that the Marfan community needed a celebrity of its own to make Marfan syndrome something everyone had heard about. I was wishing for a world where my rare disorder didn’t seem so rare—or as disordered as it felt sometimes.