Children with rare diseases often feel alone in their plight, but one Huntington Beach girl is doing her part to teach her peers there is a support system out there.
Chloe Fernandez is an 11-year-old girl with primary ciliary dyskinesia, commonly referred to as PCD. It’s a severe lung disease that causes breathing problems and requires constant care.
"It feels like I can't get any air into my lungs," she said.
Chloe has to use a nebulizer several times a day to help her breathe and feel better. She's also home schooled now to avoid germs that may exacerbate her symptoms.
At home, Chloe writes in her diary about her frustrations with having PCD. Now, other children with PCD can read about her experiences.
The Make a Wish Foundation offered Chloe the chance to meet two of her idols -- talk show host Ellen DeGeneres or actress and singer Zendaya. Instead, she wanted to publish her journal.
"I was like, this could be a book for other kids living with PCD that think they’re alone but they’re actually not!"
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Make a Wish helped her publish "PCD Has Nothing on Me" in 2016. It details her experiences with doctors and nurses and comes complete with illustrations.
"This is so cool, I actually did it. I’m helping other kids, you know?"
Chloe’s mom, Leslie Mota, says her daughter’s work is inspiring.
"Because she's learned already at such a young age what I think some of us adults takes a lifetime to learn, and some die never learning … life is about paying it forward. It’s about doing for others, it’s about giving more than it is receiving."
Chloe also received WebMD’s Health Hero Award in 2017. She’s currently writing her second health-related book as she continues to encourage people to never give up.
"I have PCD but PCD doesn’t have me. That’s what I want other kids to know."
For more information on PCD, visit the pcdfoundation.org or Chloe’s website chloerfernandez.com.
