Skylar Darga has a knack for making life with cystic fibrosis look like fun and games.

That’s how it was on this winter day, in her room at Spectrum Health Helen DeVos Children’s Hospital. Her lungs needed exercise, so she decided she was in the mood to play hockey.

She set up goals 10 feet apart. A mini trampoline and linen hamper marked one. A trash can and tray stand marked the other.

She recruited a cheerful nurse named Holly Heil, RN, as her opponent. They took up hockey sticks and battled through a spirited game, laughing and teasing each other as the plastic puck flew and ricocheted off the walls and bed. Finally, Taylor scored her 10th goal, wrapping up the game 10-6.

“Yes!” she shouted, arms raised high. “I told you I’d win.”

Victory comes in many forms. And for 12-year-old Skylar, victory over cystic fibrosis often means keeping her spirits up, even when cystic fibrosis forces her to the sidelines.

“I tell everyone all the time that she’s my hero,” said her mother, Jessica Darga. “I have not met anybody who has taken the things that she has taken and has such a positive outlook on life.”

Asked what drives her positive outlook, Skylar didn’t skip a beat.

“Knowing people love me,” she said. “When I tell people I have a lung disease they say, ‘You don’t look sick.’ I tell them, ‘That’s because my mom takes good care of me.’”

First signs

Skylar has battled all her life with cystic fibrosis, a genetic disorder that mostly affects her lungs, but can also affect her pancreas, liver, kidneys and intestines.

The first signs of cystic fibrosis appeared when Skylar was an infant. Her mom took her to the doctor’s office at least a dozen times because Skylar kept getting lung infections and was not gaining weight.

When Skylar was almost 1 year old, Darga took her to a walk-in clinic near their home in Alpena because once again, she had trouble breathing. Skylar weighed only 12 pounds at this point, and Darga desperately wanted to know what was wrong.

She recalls with gratitude the older doctor who met them in the exam room. He took one look at Skylar and asked her mom, “Do you know what cystic fibrosis is?” That was the first she had heard of the illness.

He ran a sweat chloride test that confirmed his suspicions. With that diagnosis, he contacted a pediatric hospital for a referral. When he learned the office couldn’t see Skylar for six months, he told Darga they couldn’t wait that long. She was too sick and malnourished.

They contacted Helen DeVos Children’s Hospital and got an appointment the next day with John Schuen, MD, the division chief for pediatric pulmonology. Darga didn’t mind the four-hour drive to Grand Rapids if she could get answers and help for her daughter.

Skylar now lives in Owosso, in central Michigan. She and her mom and her dad, Nathan Lott, have been going to the cystic fibrosis clinic at Helen DeVos Children’s Hospital ever since.

From despair to hope

Cystic fibrosis, caused by a gene mutation, affects the cells in the airway and sinuses, creating a buildup of mucus. It can damage the airway and lead to lung and sinus infections.

Keeping her lungs clear requires a 40-minute regimen, performed at least twice a day. She gets a breathing treatment and wears a vest that shakes up her lungs, loosening mucus. When she’s sick, she might do three or four treatments a day.

She also takes enzymes needed to digest food. Until two years ago, she had a feeding tube to help provide extra nutrition.

She’s got a lot of energy. She’s got a lot of enthusiasm for life. She’s a hard worker. … And she has a good sense of humor.

Dr. John Schuen
Pediatric pulmonologist

It’s a busy medical routine, but Skylar has flourished with it.

“At the time when she was diagnosed, as sick as she was, I honestly didn’t know how long we had,” Darga said.

Now she has hope for her daughter’s future.

“She’s going to get married. She’s going to have kids. And she’s going to outlive me. She’s a stubborn one.”

Music lessons in the hospital

Like others with cystic fibrosis, Skylar is vulnerable to lung infections.

But for seven years, she and her mother managed to handle the infections at home, with help from their medical team. In the past year, however, she hit a rough patch.

Skylar ended up at the hospital three times—for a total of seven weeks in 2017.

I tell everyone all the time that she’s my hero.

Jessica Darga
Skylar’s mother

During a recent two-week hospital stay, she sat on her bed doing a breathing treatment, while the vibrating vest shook her chest. As soon as she was done, she showed off the new skill she acquired during her hospital visits: playing music.

She learned to play the keyboard and the ukulele from Child Life music therapist Bridget Sova. A nurse taught her how to read music.

She took turns with the instruments, playing Elvis Presley’s “Fools Rush In” and “How Far I’ll Go” from the movie “Moana.”

Urged to sing, she laughed.

“No, if I sang, you would tell me to be quiet,” she said. “I promise you—you would tell me to be quiet.”

She looked forward to getting strong enough to return to school and activities. Basketball and floor hockey are her favorite sports. And she loves cheerleading.

As she played, two visitors appeared at the door: Grand Rapids Griffins hockey players Dominic Furgeon and Robbie Russo, who were visiting children in the hospital.

She performed Christina Perri’s “A Thousand Years” on the keyboard for them. They applauded.

“That was so cool,” Skylar said after the hockey players said goodbye. “I’m probably going to have dreams of this tonight.”

Her own Griffins jersey

The next day, Skylar left the hospital and returned to her home in Owosso—her family moved from Alpena several years ago. She got busy making up class work missed during her 34 absences from school.

Six weeks later, she returned for a follow-up visit with Dr. Schuen. She had a cough, but felt good.

Dr. Schuen listened to her lungs.

“Big breaths, kiddo,” he said. “You sound good. That’s encouraging.”

The visit held a special surprise. Skylar had been invited to appear as a “Captain’s Kid” at a recent Grand Rapids Griffins hockey game. As the captain’s guest, she would have been introduced to the crowd and dropped the puck before the game began.

She planned to go to the game with her parents and six brothers and sisters. A blizzard foiled that plan. She and her family could not make the 90-mile drive from the east side of the state.

But the Griffins sent two gifts for Skylar: a hockey puck and a Griffins jersey.

“They wanted to make sure you got this,” Dr. Schuen said. “They said hello from the team.”

Skylar admired the “C” for Captain on the jersey and the number 55 on the back.

“That’s my number now,” she said.

And when she put on the jersey, it draped long over her tiny, 4-foot-9-inch frame.

Skylar looked up with a smile.

“Lucky girl,” she said.

As an almost-teenager, Skylar began an educational program for adolescents with cystic fibrosis. It helps them learn to take charge of their medical needs, rather than rely on their parents as they did when they were little kids.

Dr. Schuen said Skylar is well-equipped to meet that challenge—because of her family support and her own resiliency.

“She’s got a lot of energy. She’s got a lot of enthusiasm for life. She’s a hard worker,” he said. “Those are ingredients for success in life in general—whether you have cystic fibrosis or anything else.

“It doesn’t mean bad things aren’t going to happen to us because sadly they will from time to time. But it just helps us get through it.”

Skylar smiled and looked at him wryly. “That was touching,” she said.

Dr. Schuen laughed, adding, “And she has a good sense of humor.”