One year ago, 11-year-old Jen Dunlea had lungs so riddled with infections doctors discussed a lung transplant. She and her mom, Laurel, lived in Southern California and spent 90 percent of their time in hospitals. “She was sick, and we had no life,” Laurel says.
One year later, the best-friend, mother-daughter duo lives in Stapleton, and Jen’s health continues to improve with care at Children’s Hospital Colorado. “Our luck finally changed once we moved here,” Laurel says.
Jen has cystic fibrosis (CF), an inherited life-threatening disease that causes buildup of mucus in the body that can damage and infect organs, most often the lungs. Jen is one of 30,000 people in the U.S. living with severe CF. The disease is the most common genetic problem in the U.S., though it’s widely unheard of. Laurel certainly didn’t know about the disease before Jen’s diagnosis.
When Jen was a baby, Laurel knew something was wrong with her. She felt crazy when doctors dismissed Jen’s sickness as a bad cough—one of the symptoms of CF. Jen was finally diagnosed at two years old, which is late to catch the disease. “It was like mourning the death of my child,” Laurel says. For a long time, Laurel couldn’t speak about it without weeping.
Forty years ago, the life expectancy with CF was 16 years old. Today it is 38 years old.
Everybody with CF is different and requires an individualized treatment plan, according to Dr. Frank Accurso, Jen’s primary CF doctor at Children’s Hospital Colorado and a professor of pediatrics at the University of Colorado School of Medicine. He says the disease is best treated with a team approach, which can include a doctor, nutritionist, psychologist and more. There are 110 CF clinics in the U.S. They all have to follow certain guidelines, but treatment can vary widely within those guidelines based on the individual care team, Dr. Accurso says.
Jen and Laurel were not happy with the CF team in Southern California. “I watched her lung function get worse and worse,” Laurel says. She remembers the series of failed treatments, which at one point included more than a dozen medications.
Soon, more memories of Southern California start flooding back.
“Remember that one feeding tube,” Jen says.
“Oh that feeding tube,” Laurel says.
“It went through a vein.”
“And into the heart.”
“That was disgusting!”
“Yeah it was. I couldn’t even be in the room to watch.”
“Ah, memories.” They laugh. Jen, an animated speaker, extends a lanky arm, dramatically turns her head the other way, and closes her eyes in disgust (she wants to be an actress).
With treatment at Children’s Hospital Colorado, Jen now takes less medication than most people with CF. She follows a strict medication regimen that has kept her CF under control. She hasn’t been hospitalized in more than a year, and she only missed one month of school this past year. Laurel believes the success is because the care team truly listens to Jen’s symptoms, and Dr. Accurso is dedicated to each patient.
“He is the sweetest,” Laurel starts.
“Most understanding,” Jen adds while munching on Pringles. (People with CF eat what most people avoid—salty, fatty foods to help gain weight, a common struggle with CF.)
“Brilliant,” Laurel continues.
“And most humble man, we’ve ever met.”
Dr. Accurso says the team tries to foster trust and says there’s often a close bond between a family with CF and caregivers. “Our whole goal is to help individuals with CF live a normal life as possible.”
Laurel was anxious to leave their California home and didn’t even expect they would stay in Colorado for a year.
Jen now has close friends from Westerly Creek Elementary. Although people with CF cannot be together because they can spread dangerous bacteria among one another, Jen finds support in friends.
So a year has passed, and the two haven’t returned to California. When asked about their plans for the future, they look at each other. “We’re going to stay,” Laurel says. “She really loves it here.”