Sean Dean of Phoenix, AZ is no ordinary sophomore in high school. He is a second degree black belt, enjoys mixed martial arts, and also enjoys singing and dancing. You see, these extracurriculars help keep his lungs strong because Sean has Cystic Fibrosis (CF).
Sean was diagnosed after weeks of being unable eat enough and losing weight rapidly. While his pediatrician claimed it was just a “failure to thrive”, by the time he got to the emergency room, a team of doctors suspected CF. Sean’s parents didn’t know much about CF and as Sean explains, at first his parents were devastated. But after some time, “they both just decided that they were not going to let the diagnosis take over. They were going to learn to live the best possible life around it and jump on board with the Cystic Fibrosis Foundation to find a cure.”
With that in mind, Sean is not only attending high school uninterrupted, but he is multi-talented, which definitely keeps him busy! Sean explains, “I love to sing, dance, and act. I am involved in multiple choirs at my school including a show choir, which mixes singing and dancing which is great exercise for my lungs. I am also a second degree black belt and have been doing Martial Arts since I was in first grade. I enjoy spending time with friends and family, traveling, and making memories. I am also interested in architecture to possibly pursue as my future career.”
Being so active and managing CF isn’t a cake-walk however. As Sean told me, “balancing Cystic Fibrosis, my health, and being a student can become very tricky at times. Especially when traveling, attending multiple extracurricular activities, rehearsing, or preparing for finals. I have to remember that my health, even when time is stretched thin, always has to come first, because if not and I get sick, I cannot participate in any of the extracurricular activities I love and it will also affect me in how I’m performing in school.”
At such a young age, Sean has had to prioritize things that most high schoolers don’t even think about. His message to people in the CF community is beautiful, complex and hopeful:
“I hope to have better meds or at least fewer meds. Ultimately I hope for there to someday be a cure for Cystic Fibrosis and for CF to stand for “Cure Found”.”
His message to the greater rare disease community is simple:
“Don’t let your disease put you in an enclosed box.”