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“PCD Has Nothing On Me,” a 47-page illustrated book, chronicles Chloe’s three-year journey through diagnosis, treatment, and hospitalizations.
“This book is dedicated to all the kids with chronic illness,” she writes in her introduction. “Stay strong, stay positive, keep the faith and never stop believing in miracles.”
For the last three years, Chloe was mostly in and out of hospitals because of her rare genetic condition.
PCD, or primary ciliary dyskinesia, prevents the lining of the lungs, or cilia, from removing mucus and foreign material that enters through the airways. Often, it leads to severe difficulties with breathing.
At the urging of her mom, Leslie, Chloe kept a journal of her thoughts and feelings during her hospitalizations.
Although she is now a fourth-grader at Somerville Elementary School, Chloe spent much of the last few years being home-schooled to reduce her exposure to germs.
To see what other kids with PCD were going through, she and her mom searched the children’s hospital library at Hackensack University Medical Center (HackensackUMC) for a book that would help her know what to expect and how to manage the condition.
They came up empty-handed.
Then Chloe had an idea: she could write the book she was looking for. With the help of Make-A-Wish New Jersey, she became the first-ever Make-A-Wish recipient to write a book.
Recently, she did two book signings — at Barnes and Noble in Paramus in June and Little Skye Children’s Boutique in Ridgewood in July.
Before the Barnes and Noble event, Make-A-Wish sent a white stretch limousine to chauffeur Chloe to the event. Almost 100 people attended and 60 books were sold.
Chloe equally splits all proceeds from her book sales with Make-A-Wish New Jersey and Josephine’s Garden at the HackensackUMC Children’s Hospital, where she spent hours as a pediatric patient.
“That place was very special to me,” she said. “I forgot about my IVs and my worries when I was up there.”
Additionally, she is donating 100 percent of the proceeds of her book sales purchased here, now through the end of the year, to the Bergen Volunteer Center.
Today, a year after her last operation, Chloe is on seven medications. She uses a nebulizer and airway clearance vest to help her breathe. She follows a vegan diet.
Also, she has taken up swimming and joined a harmonica-playing group that meets at Holy Name Medical Center in Teaneck. Both activities boost lung capacity.
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