4 Stories From the CF Community

Unless you have cystic fibrosis or live with someone who does, it's hard to truly understand the full impact of this disease. Through the power of storytelling, these CF community members are helping to bridge that gap of understanding. Check out the latest books and films created by people intimately familiar with CF.

| 7 min read
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Lindsay Dahl
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Lauren Bombardier Weeks
Author, Growing Up Sick

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I keep finding myself on Facebook chat talking to parents of kids with CF who just don't know where to turn. How do I get my kid to do his treatments? How do I protect him? How do I make sure he grows up with the same positive perspective as you? What did your parents do that gave you this attitude?

Growing Up Sick blossomed out of these tough conversations. Part memoir, part advice for parents raising a child with cystic fibrosis, or any other debilitating illness or disability, Growing Up Sick tells the story of how my parents guided me from a toddler who ran away at the mention of “treatment time,” to a teenager who feared for her future and skipped her medications, to an adult who went to college, improved her lung function, and chose to say “so what?!” when faced with the prospect of a short life by climbing mountains, running races, and breathing in the small moments instead of using CF as an excuse to procrastinate living.

As a parent, you will learn the tricks to get smiling kids in the hospital, how to talk about death with your child, how to get your kid to be compliant, how to navigate obstacles like taking medicine in school, and most importantly, how to use something you already do as a catalyst for creating a positive attitude for yourself and your family. Growing Up Sick will give you the tools to give your child the life you're worrying they'll miss out on.

Visit thesowhatlife.com/books to grab a sneak peak of the book and stay up-to-date on its release.

M.C. Cooper
Author, Ki-Ki's Bedtime Story

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Ki-Ki's Bedtime Story is a delightful tale about a little girl with CF and the magical powers her mother uses to keep her daughter healthy and her spirits up. After tucking her in at night, the mother goes on an extraordinary journey into Kiki's lungs to fight this disease head-on. The story emphasizes the power of positive symbology and the effects it has on fighting the detrimental effects of a chronic illness.

My daughter, Chrissy (Kiki) was born in 1989, before the gene that causes CF was discovered. I was determined to help my daughter live a normal life, knowing that it would involve hard work and determination. I have instilled the importance of living life with a healthy mind and body, while also inspiring Chrissy to pursue her dreams.

Today, at age 29, Chrissy has defied all the odds. Graduating from La Salle University with a BSN, RN in four years, Chrissy accomplished her dream of becoming a nurse to help others. Her husband, Rob, is also a nurse. They traveled to Chiang Mai, Thailand to work in a special needs orphanage and teach English and science at a nearby school. Chrissy and her husband have continued to fulfill her dreams like skydiving, and most importantly, starting a family. Chrissy happily delivered a healthy baby girl, Audrey Marie, in July 2016.

The purpose of this book is to help children suffering with chronic illnesses, like CF, rest easier at night and dream of a better tomorrow. It inspires families to believe in the power of positive energy and helps them realize that never giving up can lead to a life of happiness, fulfillment, and endless rewards.

Kiki's Bedtime Story is available for purchase on Amazon.

Rachel Jackson
School Nurse, Walpole High School

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As a high school nurse in Walpole, Mass., I was presented with a unique situation: I had three students with CF attending the same school at the same time. As I prepared to accommodate these students, I quickly discovered there was not a clear path to follow. I set out to pave the way. I planned for many years and wrote two posts for the CF Community Blog about my preparations. I consulted with nurses, families, and students from all over the world about my plans and the documents I created.

The staff and student body have been so wonderful with helping to keep our students with CF healthy. In fact, the film students at Walpole High School made a CF documentary for the nationally recognized Walpole High Film Festival. High schoolers Jess Horne, Nicole Waters, and Jimmy Haskins made, "Six Feet of Separation," a documentary centered around cystic fibrosis at Walpole High School. The film follows three students who have CF, investigating their daily routines and hardships. The film also looks into the life of the last student with CF to pass through Walpole High, and how his life compares to the those of today's students.

Through interviews with staff from the Cystic Fibrosis Foundation's Massachusetts chapter, the filmmakers discuss the hope that lies in the future for finding a cure for CF. The documentary's goal is to showcase the hidden battles faced by students in their very own school and to encourage the public to raise awareness for the disease and to donate and fundraise to help find a cure.

Learn more about “Six Feet of Separation” from the One-Point Perspective Podcast.

Aditi Kantipuly
Author, Zebra Alphabet

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All children across the globe -- whether they have a rare disease, commonly found disease, or no disease at all -- are special and we must celebrate who they are. Rare genetic conditions don't typically get a lot of attention for funding and research. I wanted to write a book to shift this perspective. I wanted more people to care about the approximately 7,000 rare diseases, like cystic fibrosis, that collectively affect 350 million individuals worldwide.

I went back to the drawing board and asked myself, “what helps create a common understanding in a community?” I think the vehicle for that is language. People relate through language. Language allows information to flow within a community of people. That's where the Zebra Alphabet comes in. The book uses the letters of the alphabet and illustrations to transform complex, rare diseases into recognizable and relatable images.

Even though cystic fibrosis affects a small number of people, the challenges that arise with CF, and any other rare health conditions, are universal. It's important to recognize that all of those affected by rare diseases are part of a much larger community, because there is strength in numbers.

Learn more about the Zebra Alphabet at zebraalphabetbook.com.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Lindsay is a digital project manager for the Cystic Fibrosis Foundation, overseeing the strategy and execution of initiatives such as the first-ever BreatheCon. She recently earner her master's degree in social enterprise from American University, where she studied business and innovation methods to create change and opportunity within purpose-driven organizations.

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