Works by the CF Community

We're spotlighting two authors who have written books based on their experiences with cystic fibrosis. Learn what the experience of writing them has meant for them, and what they hope their readers will get from reading their stories.

| 4 min read
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Bethlehem Horn
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Nick Trout
Author, The Wonder of Lost Causes

As a CF parent for nearly 30 years, I've met plenty of folks who recognize my daughter's determination to live a full life with cystic fibrosis, but quietly believe it to be a lost cause. As a veterinarian for nearly as long, I've come across many a sick and mistreated animal, labeled as a lost cause, yet capable of defying the odds. And that's why over these past three decades, I've come to realize that when we open our hearts and minds, there's absolutely no such thing as a lost cause because, more often than not, if kindred souls connect, magical things will happen.

That's why I wrote The Wonder of Lost Causes, the story of Jasper, an 11-year-old boy with CF; Kate, his single mom, struggling to keep it together; and Whistler, an old, mistreated mutt that comes into their lives, determined to set them on a meaningful path to a better future. They are the intersection of the magic.

Based on my daughter Emily's experiences, I wanted readers to see what it is really like to live with CF, and how amazing and inspirational CF kids can be. Drawing from my own experiences, I hoped to capture the joy and pride I feel for having this child in my life. Writing in a female voice was difficult, but vital, because those CF mamas are more often than not the primary caregivers, and it was time to pay tribute to their selflessness and bravery. Writing about a canine philosophy on life was much easier. Sometimes their ability to live in the moment and live to the max feels just right. I hope readers come to see the wonder that can be found in those that others overlook.

 

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Mallory Hicks
Author, Beauty and the Disease

Mook is a little girl who was born with cystic fibrosis. She is like any other little girl her age, except for a few extra challenges. Mook finds silly reasons why school can be more fun for her because she has CF. She encourages herself and others to try and see the positive aspects of treatments, clinic appointments, and hospitals stays, while also showing the serious side of CF. Mook is hopeful for her future, as well as the advancements in cystic fibrosis research! Mook's character is based off a real-life woman who has grown up to be all the things that Mook dreamed one day she would become. Today, the real Mook is a child of God, a wife, a mother, an interior designer, a beauty queen, a pot-bellied pig owner, and an author!

I wanted to write this book for a couple reasons. I wanted to help explain and spread awareness to others who don't fully understand what cystic fibrosis is. I also hoped Beauty and the Disease would be a way for the younger generation of children who can't use social media or the internet to feel a CF community connection. I wanted to bring hope to CF children, that despite their struggles, they can grow up to live the life they have always dreamed of having! I believe that there is no better prescribed medication than hope!

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Bethlehem is a senior web specialist at the Cystic Fibrosis Foundation. In her role, Bethlehem manages day-to-day web operations and enhances the site's functionality and user experience. She has a bachelor's degree in communications with a concentration in public relations from the University of Maryland, College Park. Outside of work, Bethlehem enjoys exercising, cooking, and spending time with her family.

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