Cystic Fibrosis: Jessica’s Story

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From the time her daughter was a baby and diagnosed with cystic fibrosis, Debra Burke has administered treatments, filled prescriptions, and done her fair share of worrying.

More than two decades later, Debra still does the latter. But with her daughter at college more than 400 miles away, she has had to give up control of the rest. It hasn’t been easy.

Jessica CF patient in Israel “I’ve had majority responsibility for so long,” Burke says of her daughter, Jessica. “It was a big change for both of us.”

Every parent who sends a freshman off to college worries. But the typical concerns over getting enough sleep and eating right are magnified when a child has a chronic illness. And stepping back from the role of primary caregiver to let your adolescent take over can feel like a leap into the unknown. The key, the Burke family found, is preparation.

Growing up with cystic fibrosis

Jessica was five months old when she caught a cold that wouldn’t go away. Her pediatrician ordered tests, and Jessica was diagnosed with cystic fibrosis (CF), an inherited disease that causes a thick buildup of mucus in the lungs and other organs. That diagnosis began their long relationship with the Cystic Fibrosis Center at Children’s Hospital of Philadelphia (CHOP).

Over the years, the Cystic Fibrosis Center has worked side-by-side with Jessica and her family to manage her CF. Her treatment has included medications, nebulizers, enzymes, and other therapies aimed at reducing the chronic respiratory issues and recurrent lung infections that frequently affect people with CF. Jessica considers herself fortunate that her symptoms are mild, compared to most.

During her junior year in high school, she started a new medication as part of a trial that eased her symptoms considerably. Her lung function improved and she was no longer as susceptible to infection. So, when Jessica began her college search, her parents felt comfortable allowing her to apply to schools far from home. They did have one criteria, however.

“I wanted her to be near an accredited cystic fibrosis center; that was part of the deal,” Debra says.

Preparing for college

Jessica CF patient wearing Ohio State tshirt Jessica gears up for an OSU game. Jessica decided to attend Ohio State University. The summer before freshman year, she and her mother attended a seminar hosted by CHOP’s Transition to Adulthood Program about starting college with a chronic illness. REACH for College is a program for high school students with chronic illnesses who are planning to attend college.

There, they picked up helpful tips and came away with the comforting realization that a lot of teenagers and parents were dealing with the same concerns.  

“There were kids there with diabetes, Crohn’s disease and a host of other illnesses…that gave her perspective,” Debra says of her daughter. “There are a lot of people who have a lot of stuff going on, but to look at them, you wouldn’t know.”

Armed with information from the seminar, Debra put together a binder of doctor’s phone numbers, prescriptions, PFT and Lab results and other essential medical information for Jessica to bring to college. They created a plan for Jessica to follow in the event she fell ill while at school. Jessica also registered with the disabilities office on campus, which gave her priority scheduling for classes and ensured she was assigned an air-conditioned dorm room.

Finally, Debra stocked up on over-the-counter medicines for her daughter, arranged to have her mail order prescriptions sent to her new address, and crossed her fingers.

Learning to let go

That first semester Debra called her daughter often, checking in on whether she was taking her medication and doing her therapy.

Jessica was keeping up with her medication, but Debra soon learned that she was not using her therapy vest, which loosens mucus in the chest. At home, Jessica used the vest twice a day.

Debra struggled with how much to push. On the one hand, Jessica’s symptoms were stable. On the other, Debra worried that skipping therapy would make it that much harder for Jessica to bounce back if she got sick. Eventually, she did what most parents of college students do, and accepted that her daughter would make her own decisions.

“My husband had to talk me down a bit,” she laughs.

As Jessica adjusted to life as a college student, Debra was adjusting to life without her at home. Their routine was gone — no more after-school therapy sessions with the vest and no more making sure Jessica took her medications. Even little things, like the newly freed-up space in the medicine cabinet, were reminders that the entire family had entered a new phase.

Just a few months later, that new phase became the new normal. And when Jessica came home for Thanksgiving, Debra saw for herself that her daughter was doing well. Finally, she was able to start letting go.

“I guess at some point she had to learn to do it for herself and I had to learn to let go,” Debra says. “When she comes home, we fall back into similar patterns, but now I know she can take care of herself.”

What’s next for Jessica

Jessica CF patient riding a camel in Israel Jessica during a trip to Israel. Jessica has fully settled in at Ohio State and has become a diehard Buckeyes fan, following the team across the nation, including trips to New Orleans and Phoenix. She holds leadership positions in her sorority and various campus clubs, and is also active in BuckeyeThon, which raises money for children fighting serious illnesses at Nationwide Children’s Hospital in Columbus, Ohio.

“I like to live an active lifestyle and not let my illness stop me from being a normal student,” she says. “I have friends find out that I have cystic fibrosis and freak out because they never would have thought I was any different from them.”

Jessica will graduate in spring 2017 with a bachelor’s degree in exercise science. Her plan is to take some time off, then return to graduate school to become a physical therapist.

Published April 2017

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