Chloe R. Fernandez is a published author, model and actress who has written a script for a TV show and has a stellar idea for a health app. The New Jersey-based dominicana is also just nine years old. In less than a decade, the young Latina has accomplished so much, but living with primary ciliary dyskinesia (PCD), she has also suffered through a lot.
PCD is an incurable genetic disorder that attacks the cilia, tiny hair-like structures that line the airways, ears and sinuses, keeping them clean and clear of infections. When the cilia doesn't work properly, people have a higher risk of infections of the lungs, ears, throat and sinuses, which could lead to serious damages down the line.
Sadly, Fernandez understands this all too well. At five months old, she had two cases of respiratory syncytial virus (RSV). When she was a year old, she was wrongfully diagnosed with chronic asthma, but she wasn't responding to the medicine. In one school year alone, when Fernandez was in first grade, she contracted pneumonia and bronchitis more than seven times. The girl's mother, Leslie Mota, knew something wasn't right. She pulled Fernandez out of school and sent her to Children's Hospital of Philadelphia and Hackensack Hospital for more testing, where she was given an accurate diagnosis of PCD.
Things changed quickly for the young Latina: She had to be home-schooled, she couldn't play the active games she previously enjoyed with her friends and she even had to alter her eating habits. Fernandez was distraught, taking to her pen and notebooks to express her sadness over no longer feeling "normal." She didn't know it then, but her journals, filled with information about PCD, how she lives with it and her thoughts around it, would become a book, one the New Jersey chapter of the Make-A-Wish Foundation would help her publish.
Ahead, learn more about Fernandez’s inspiring story, why she felt compelled to write a children’s book, “PCD Has Nothing on Me,” her advice to other kiddies living with a chronic illness and so much more.
1. You are so young. When did you decide you wanted to write a book?
When I was hospitalized, I told my mom that I wanted to read a book written by a kid with PCD, or another chronic illness, that knew what I was feeling inside and out. I wanted advice and support from a kid like me, someone I could relate to. But we couldn’t find one. I’ve always loved to keep journals and have been doing so since Kindergarten. Writing has always helped me feel free of all that I have to go through, as far as my medical treatments, doctor visits, being home-schooled, hospitalized and just not feeling normal. I write daily. In 2013 and 2014, I spent more time in the hospital than with family and friends. I wrote a lot during that time. I wrote about what I was going through and how I was feeling. That’s when I told my mom I wanted to write the book that I needed and wanted. When I grabbed my journal to start writing, I realized, wait a minute, my journals are a book. I just needed to organize them into chapters.
2. Tell me about the process. I know you had help from the Make-A-Wish Foundation.
It was a very long process. OMG, I now have so much more respect for published authors. They really go through a lot. I thought my mom was too strict in always making me rewrite my sentences and paragraphs (she is always on top of me about how I write and speak!), but book editors are no joke. My editor was amazing, but we did have a lot of back and forth. I was not comfortable changing or cutting certain things out of the book, but I had to, and it turned out great. Both my illustrator and my editor donated their services to Make-A-Wish NJ to make my wish of having my book published possible (thanks again, Kaitlyn and Lizbeth). It was the first request to have a book published that the Make-A-Wish NJ had ever received, so this entire process, from getting my book published to having my first book signing, was a first and learning experience for both Make-A-Wish NJ and myself. We made mistakes, but we learned along the way and corrected them. I learned how to compromise, be patient and how to work in a team.
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