Diagnosed at age 6 with a severe breathing and lung disorder known as PCD – Chloe Fernandez, now 9, of Ridgewood spent most of the next three years going in and out of the hospital dealing with this rare genetic condition.
PCD, or primary ciliary dyskinesia, is an inherited disorder that prevents the lining of the lungs, or cilia, from removing mucus and foreign material that enters the lungs through the airways and often leads to restricted breathing or severe difficulties with breathing.
During those three years of hospitalizations, at her mom’s urging, she kept a journal of her thoughts, feelings, dreams, and hopes. Although she is a student now in fourth grade in Ridgewood’s Somerville School, much of the last few years have been spent being home-schooled and away from her peers to reduce her exposure to germs.
To see what other kids were going through who had PCD, Chloe and her mom, Leslie, searched through the children’s hospital library at Hackensack University Medical Center looking for a book that could help her to know what to expect and how to manage the condition.
Both came up empty-handed, surprised that nothing was available. Then Chloe had an idea: She could write a book for children with PCD and help them. A few years before, Chloe had been inspired by an author who visited her school and talked about writing and books.
With the help of Make-A-Wish New Jersey, Chloe became the first-ever Make-A-Wish recipient to write a book. Titled “PCD Has Nothing On Me,” the 47-page illustrated book chronicles Chloe’s young journey through diagnosis, treatment, and hospitalizations in 13 chapters such as “Mommy, Why Me?” “No Playdates,” “Swimming Will Help,” and “Fancy Without Perfume.”
Her introduction includes four pages of thanks and appreciation to her doctors, nurses, medical staff, Make-A-Wish, teachers, friends, family and dog, Abby. “This book is dedicated to all the kids with chronic illness: Stay strong, stay positive, keep the faith and never stop believing in miracles,” she writes.
Following surgery last year, Chloe is on a regimen of seven medications, including steroids and antibiotics, a “mostly” vegan diet, and uses a nebulizer and airway clearance vest to help her breathe.
She recently did two book signings: in June at Barnes & Noble in Paramus and in July at Little Skye Children’s Boutique in Ridgewood. She said that Make-A-Wish surprised her before the Barnes & Noble book signing by providing a white stretch limousine to chauffer her to the event. It was the first time she rode in a limousine. She said almost 100 people were at the event and 60 books were sold.
Chloe equally splits all proceeds from her book sales to Make-A-Wish New Jersey, and Josephine’s Garden at the HUMC Children’s Hospital. She spent hours enjoying the garden as a pediatric patient and wants her book to “give back” to both organizations, and especially the children’s garden.
“That place was very special to me … I forgot about my IVs, and my worries when I was up there,” said Chloe. The garden was named after another pediatric patient, Josephine Rispoli, who, with her mother Heidi, dreamed of a garden for children at the hospital. Though Josephine succumbed to a malignant brain tumor in 2011, Josephine’s Garden opened at HUMC in 2012.
Chloe said that a book signing is anticipated at HUMC’s solarium in August or September.
For now, Chloe said that she is “feeling good” and enjoying the summer. She said it’s been “about a year” since she was last hospitalized for her condition. Upon mom’s advice, she said she is following a vegan diet except for an infrequent bacon and eggs breakfast. The vegan diet – basically a no meat, eggs and dairy diet - helps reduce build-up of mucus in her lungs.
In addition, her doctor advised her to take up swimming and she herself has joined a harmonica-playing group that meets Wednesdays at Holy Name Hospital. She also plays piano. Both swimming and harmonica-playing boost lung capacity and help assist lung function. Chloe said she plays and swims weekly to help her lungs.
In 2015, Chloe and her mom participated in Bergen Volunteer Center’s “All Wrapped Up” holiday giving program and learned about the many activities that volunteers perform daily throughout the county. She said she wanted to do something to support the center and its work.Chloe has decided to donate 100% of the proceeds of her book to the Bergen Volunteer Center now through the end of the year when the book is purchased through this link for the BVC to get create. Purchase PCD Has Nothing On Me today!
In addition to being an author, Chloe has modeled and been featured in Ultra Style and Talent Magazine. “I’m very, very stylish,” she said with a smile. Currently she has another book in the works, and her mom, who monitors her social media accounts, said she has a few hundred Twitter and Instagram followers.
“I think it takes braveness and strongness to volunteer. Stay strong and stay awesome,” wrote Chloe in a copy of her book she donated to BVC’s library.
By Michael Olohan, BVC Volunteer