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An 11-year-old wins WebMD award for her book explaining rare disease

A young girl didn't hide her disease. She wrote a book about it and won $25,000.
WebMD Health Heroes Awards
Chloe Fernandez speaks during the 2018 WebMD Health Heroes Awards at WebMD headquarters on January 22, 2018 in New York City.Kris Connor / Getty Images for WebMD

Despite living with a chronic illness, Chloe Fernandez, 11, has already inspired many by putting her experience dealing with a rare disease into a book that has gained her national recognition.

“The biggest challenge in my life was the biggest opportunity to bring awareness to PCD,” Fernandez said in her 2017 WebMD Health Hero acceptance speech on Monday night. Each year, WebMD honors inspiring advocates, innovators and mentors with this national award.

Fernandez was only was 6 years old when she was diagnosed with a rare disease known as primary ciliary dyskinesia (PCD). This health condition affects tiny, hair-like structures that line the airways, causing breathing problems as well as respiratory failure.

At the time, there was limited information available on PCD, including how patients and families have coped with the illness. This motivated Fernandez to write her book “PCD Has Nothing on Me!” She donates all proceeds from her book to Make-A-Wish Foundation-New Jersey and the PCD Foundation.

Image: Pcd Has Nothing on Me! By Chloe Fernandez
PCD Has Nothing on Me! By Chloe FernandezLiferich

“I want the money to be used to find a cure for PCD,” Fernandez told NBC News.

Her advocacy and philanthropy is what got her selected as one of WebMD’s Health Heroes for 2017. She announced on Monday night that her $25,000 award will also be contributed to the PCD Foundation.

Because of Fernandez's joyful spirit, others may not see the challenges she faces living with the disease.

“There are a lot of things that people don’t know when they see me,” said Fernandez, who is of Dominican descent and lives in California. “For example, I’m here today (at the WebMD award ceremony) but they don’t know that I woke up in the middle of the night yesterday because I couldn’t breathe. I had to use my breathing machine for like an hour to feel better.”

Fernandez’s mom Leslie Mota said she has helped her daughter deal with her disease by making her PCD diagnosis "the new normal for us."

“I want Chloe to understand that she does not have a disability, she is just differently-abled," Mota said.

Mota first learned about her daughter’s diagnosis five years ago. “Your mind immediately goes to the worst,” she said. “I freaked out, but I had to go back to faith. God won’t give us more than we can handle.”

She said she has encouraged Fernandez to spread positivity to patients, young and old, who deal with long-term illnesses. “Keep the faith and don’t let anything bring you down,” Fernandez said. “Dealing with a chronic health condition is scary, but you have to keep going!”

Mota said that other parents have reached out to her and her daughter on social media, sharing gratitude for promoting their experience with families and spreading PCD awareness.

These accomplishments are just the beginning for this young Dominicana. “I want to continue writing as well as being a PCD advocate,” Fernandez told NBC News. “In the future, I hope to go to Harvard!”