Girls Interrupted: Growing Up with Cystic Fibrosis

Hospital visits, lung infections, endless PICC lines, nights of coughing—and finally life-changing therapies

Looking back to a little over 10 years ago, my sister and I lived a completely different life. A life that was full of sickness, fear, hospital visits, and uncertainty. When my mother was first pregnant, she found out prenatally that I had a genetic disease known as cystic fibrosis (CF). Two years later my sister Cate was also diagnosed with CF before birth. Despite being nervous and scared, my family was prepared to face this battle head on while continuously searching for a cure. Thankfully, the development of rare disease therapeutics changed our lives for the better.

Growing up, I did not consider myself as having a “normal” lifestyle. My weeks consisted of hospital visits, lung infections, antibiotic courses, PICC lines in my veins, nights of coughing, weight loss, you name it. I was frequently taken out of school, dance class, playdates, and other extra-curriculars to make doctors’ appointments. I took over 50 medication pills a day, needed chest physical therapy twice a day along with nebulizer treatments. I was busy.

My sister Cate, who was trying to be an athlete at the time, was just as frustrated. She was constantly getting sick and contracting viruses, forcing her to miss soccer practices and games. Her sleepless nights full of coughing resulted in being too tired for physical activity in the daytime. She faced the challenge of not being able to keep up with her teammates, pulling herself out of games to do her inhaler or going home to do another session of chest physical therapy. We both thought of one word to describe our childhood with CF, and that word is “interrupted.” By the time I was 12 years old, and Cate was 10, we were exhausted, hopeless, and searching for an answer.

New therapies on the horizon for cystic fibrosis

Little did we know that answer was right around the corner. In 2012, both Cate and I were given the opportunity to participate in a clinical trial for Kalydeco, a CF therapy targeted towards our genotype. Taking this as a sign from God, we both did not hesitate to join the study. Our lives changed like a flick of a light switch.

The first few years in these trials were tough. In one of the early trials, I was put on the placebo pill while Cate was on the real drug, so my decline in health overshadowed her improvement. However, as time went on, Cate and I were continuously asked to participate in these trials as the developers strove to improve the efficacy of the therapies.

The most recent combination therapy, Trikafta, was approved in 2019, is what we are taking now, and since then our overall health has flourished. Our lives now consist of full nights of sleep, no coughing, more energy, and most importantly, stability. 

I now work here at Charles River and couldn’t be more grateful to be a part of the life science community. This industry altered my life in ways I cannot express. We are both beyond thankful for the life science and rare disease community that has worked endlessly to make these changes happen not only for us, but others as well. We may still have CF, but CF does not own us.

Laura Cheevers is a Client Engagement Specialist for Charles River's Research Models Services division. The main picture shows, l-r, Cate and Laura in Ogunquit, Maine.

To learn more about Laura and Cate's story, check out Eureka's sister podcast, Vital Science.