Young Patients Who Can Never Meet Each Other Unite Through Music

December 04, 2019 5:00 AM

Life-threatening risks prevent children with cystic fibrosis from ever being in the same room. But a special “fight song” inspired by The Greatest Showman’s “This is Me” brings together 26 Mott patients with cystic fibrosis.

During hospital stays, patients like Chase Kulik rarely have any interaction with other kids – especially those with the same condition as he has.

Meeting them could be life-threatening.

Living with cystic fibrosis means never being less than six feet apart from another person with the genetic disease, which causes persistent lung infections. People with the condition carry bacteria in their lungs that could be harmful to each other.

But Chase,13, recently found a way to connect with 25 other cystic fibrosis patients – through music.

With the help of music therapists at Michigan Medicine’s C.S. Mott Children’s Hospital and his family, Chase started a project to create a “fight song” for cystic fibrosis that included other children with the condition.

The seventh grader and his mom wrote unique lyrics describing life with cystic fibrosis to the tune of “This is Me,” which was famously sang by Keala Settle in The Greatest Showman. They chose the song for its uplifting message about “being yourself,” his family says.

Other Mott patients with cystic fibrosis were invited to participate in a music video incorporating the song through singing, playing an instrument, dancing or even contributing a non-musical scene. Patients were individually recorded, and the clips were edited together by the Mott Therapeutic Gaming and Digital Technology Program.

The 10-month project resulted in the YouTube video “This is cystic fibrosis.”

“What’s so special about this piece is that it brought together 26 patients who live with the same disease and are even treated at the same hospital but have never known each other,” says Mott music therapist Emma Wymer. 

“Music brought together patients who can’t ever meet in person.”

The music therapy team helped Chase pick words already in the song and replace them with phrases about what it’s like living with cystic fibrosis, including experiences with breathing tests, antibiotics, scars from ports and just being brave.

Boy with cystic fibrosis playing violin
Chase playing the violin while in the hospital.

“To me, music is sort of a distraction. It’s a way to go off into my own world and not focus on being sick. I can stop being a sick kid and start having fun,” says Chase, who learned to play violin with music therapists during frequent hospital stays that are often two weeks long.

“It was amazing to see so many people be a part of this and who feel the same way you do. This song was kind of a way to let people know ‘there are more people like you. You’re not alone.’”

Patients’ reactions to seeing themselves in a video with peers with similar journeys was inspiring, Mott music therapists say.

“There was a lot of emotion,” Wymer says. “We saw a lot of tears, laughter and excitement. It was just really special to see the smiles on their faces as they watched it. Cystic fibrosis can be an isolating disease and this project really promoted community.”

“This song was intended to unify and empower patients with cystic fibrosis. It gave them an opportunity to be visible and be seen through music.”  

Living with CF

About 30,000 Americans live with cystic fibrosis (CF), with nearly 1,000 new cases diagnosed each year. CF patients are on strict contact precautions during hospital stays, rarely able to leave rooms because of health risks. The condition was recently in the spotlight because of the movie “Five Feet Apart,” which is about two teens, with the disease, falling in love.

In people with CF, a defective gene causes a thick, buildup of mucus in the lungs, pancreas, and other organs. In the lungs, the mucus clogs the airways and traps bacteria, leading to frequent infections and extensive lung damage. Over time, this damage makes it hard to breathe. Patients also have trouble gaining weight, because the disease prevents the pancreas from supplying the digestive enzymes that are needed to break down food.

The Mott Cystic Fibrosis Center at the University of Michigan has the largest program of its kind in the state. The center participates in numerous research studies investigating the latest treatments for CF, focusing on adherence, new therapies, and nutritional health. 

“Our patients are amazing role models. Not only do they have to take a lot of medications to stay healthy and to be ready to drop everything in their life to get admitted to the hospital when needed, they can’t communicate and interact with one another,” says the center’s director Samya Nasr, M.B., B.Ch.

“This video is an example of a creative way for people with cystic fibrosis to present themselves and their struggle. (Chase) is a great young man who has been teaching all of us how to deal with adversity with a great attitude.”

Chase’s mom, Kirsten Kulik, says music has become a key part of her son’s hospital visits and the project was a meaningful way for him to share his experiences.

“This song was about showing kids with cystic fibrosis that they are warriors and they are strong and glorious,” she says. “Not everyone can understand what you’re going through every day but you are beating this disease. It’s not beating you. And no matter how bad it gets, you are stronger than you realize.”