Love story about teens with cystic fibrosis shines light on disease
Riley patient had planned to see the film ‘Five Feet Apart’ – right before landing back in the hospital on her spring break.
Desaray Shidler had plans last Friday night. The 16-year-old Indianapolis high school student was looking forward to seeing the new movie “Five Feet Apart,” the fictional story of two teens with cystic fibrosis who meet in a hospital and fall in love.
The irony is not lost on her that her plans were interrupted by a trip to Riley Hospital for Children at IU Health for treatment of her own cystic fibrosis, a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. The body produces thick and sticky mucus that can clog the lungs and obstruct the pancreas.
Desaray went to the hospital with fluid on her lungs, making it hard to breathe. She was on day 3 of an expected 14-day stay at Riley – extended visits that she’s become used to in her short life. But now, she and other CF patients are eager to see a film that they hope will help educate people about the disease.
“That’s the first thing I want to do when I get out,” the teen said as she lay in bed. Her grandmother, Mary Barton, was by her side at the place she calls their “home away from home.” The two hope to see the movie together when Desaray is released.
According to the Cystic Fibrosis Foundation, people with CF are at particular risk of spreading germs among others with the same disease. Because of this danger of cross-infection, those with the disease are advised to stay 6 feet apart at all times, but in the film, the teens decide to take back a tiny bit of control over their lives by shortening that distance by 1 foot – thus the movie’s title, “Five Feet Apart.”
Germs can spread as far as 6 feet through droplets released in the air when people cough or sneeze, the CF Foundation reports. Despite significant progress in treating the disease, infections remain a serious problem. For that reason, schools are advised to ensure that students with the disease are separated as much as possible.
Barton recalled that Desaray and another child with CF were inadvertently placed in the same first-grade classroom years ago, posing a risk to both students, but her granddaughter was moved to another class.
Life isn’t easy for CF patients, said Riley respiratory therapist Tim Conlin, who often brings Desaray and his other patients doughnuts, pizza and gummy bears when they’re in the hospital.
“The risk of catching even something small can cause a hospitalization, maybe a two-week stay,” he said. “It can throw them for a loop. It’s a tough thing for a kid with cystic fibrosis because they have to be in isolation, be in their rooms all the time, except when they go down for therapy,” he said.
The separation is designed to keep kids healthier in the long run, even if not happier in the moment. Although social media at least makes it easier for teens to stay connected to their friends, nobody wants to spend their spring break in the hospital, like Desaray is.
That’s why Conlin tries to brighten her days occasionally with surprises. Born in California, Desaray has been coming to Riley since she was 11 months old. Conlin is one of her therapists and her pal.
“He always comes to see me and brings me treats that he doesn’t have to do,” Desaray said. “The last time he got me a sloth calendar because I love sloths.”
She woke up one day to a little box of six Long’s doughnuts sitting by her bed.
“I knew it was Tim.”
As her way of thanking him, she makes colorful yarn bracelets that he wraps around his stethoscope. He repays her in gummy bears and bad jokes. “He makes me laugh. I always laugh, even if his jokes are bad.”
Conlin, who says healing doesn’t always come from medicine, plans to see “Five Feet Apart,” simply because his patients will be.
“I want to see how the movie presents cystic fibrosis and if it gives a little insight into how children and teenagers are feeling,” he said. “It might help me get insight into things I haven’t thought about.”
– By Maureen Gilmer, IU Health senior journalist
Photo by Mike Dickbernd, IU Health visual journalist