2017 Advocate: Chloe Fernandez, 10

chloe fernandez

At age 6, Chloe Fernandez was diagnosed with primary ciliary dyskinesia (PCD), a rare genetic disease that damages cilia -- hair-like structures that sweep mucus out of the lungs. Mucus builds up, causing breathing problems and repeated lung infections.

Living with PCD has meant major life changes for the sixth grader. “I see my friends running and jumping and I can’t join them,” she says. “Sometimes I feel like I can’t breathe.” Fernandez is home-schooled to avoid exposing her to the kinds of infections that used to land her in the hospital.

During one of those hospital visits, Fernandez and her mother went to the library to check out a book on PCD. They couldn’t find one. So Fernandez decided to write her own book. “It all came from my journals. I was writing about how I felt, and how it felt to live with PCD,” she says. “I wanted other kids to feel that they weren’t alone and they could do anything they set their mind to.”

With help from the Make-A-Wish Foundation, Fernandez published PCD Has Nothing on Me! in 2016, when she was just 9 years old. She’s donated the proceeds to Make-A-Wish and the PCD Foundation.

The response has been overwhelmingly positive. “A lot of people tag her on Facebook. Parents send pictures of their kids doing their treatments,” says her mother, Leslie Mota. “One mom wrote that when they’re going through a tough time, they reach for Chloe’s book. Chloe was teary eyed. She said, ‘Mom, I’m so glad, because when I was going through this I had nobody to reach out to.’”

When she isn't advocating for PCD, Fernandez models and acts. She’s walked the runway during New York Fashion Week, and she starred in two Nickelodeon commercials. In the future, “I would like to do everything that I’m doing right now, but even better,” she says. “I want people to know that I have PCD, but PCD doesn’t have me.”