Norwin soccer player tackles challenges presented by cystic fibrosis

By: Bill Beckner Jr.
Tuesday, September 29, 2020 | 5:17 PM

While most students are still sleeping, hours away from their phone alarm sounding to get them up for school, Sydney Willig is up before the sun, wide awake and confronting a disease.

She sits up in bed while wearing a vibrating vest, uses two nebulizers and takes numerous medications — something she does several times each day.

It’s a regular routine for the senior soccer player at Norwin who has learned to live with cystic fibrosis, a sickness she was diagnosed with at two weeks old.

“I was very sick last year and missed the whole season. I didn’t think I would ever get to play soccer again,” Willig said. “I was in the hospital during the season. My friends Facetimed me during homecoming so I could see the parade.”

The life-threatening illness causes mucus to build up in the lungs and can affect other organs and the digestive system.

Willig also developed “CF” diabetes and her pancreas no longer functions. She has had two reconstructive surgeries on her nose to open her nasal passage and has gone to physical therapy to learn breathing exercises.

Just walking up steps caused shortness of breath.

But Willig was willing to put up a fight.

Those with CF often have shorter lifespans, although a new medication, the landmark drug Trikafta, is showing vast improvements for Willig and has delivered a measure of hope.

Trikafta combines three drugs that target the defective protein in CF.

“It’s a big game-changer,” she said of the prescription tablet. “The last three years, I had issues at practice. We would do sprints and I would have to stop so I could fully breathe. Now I can keep up with the other girls.”

When the drug became available last November, she was one of the first to get it.

“When it was approved by the FDA, we made a doctor’s appointment right away,” she said. “My lungs were bad; I was on a list to get it right away. Ever since I started taking it, my life has changed for the good.”

Suddenly, she didn’t lose her breath as often. A walk turned into a jog, then to a full-out sprint.

Willig returned to play a shortened Cup season a few months ago with Arsenal and is now a reserve for Norwin. She has played in junior varsity games and could see varsity time this season.

“I never imagined I would be able to play again,” she said. “But I love to play.”

Willig not only attended senior night in full uniform as a member of the varsity but also took part in the festivities as a sort of guest of honor.

“She has such a positive attitude all the time,” Norwin coach Lauren Karcher said. “That spills over to everyone else. All of the girls know more about CF because of Syd.”

Norwin incorporated Willig into the ceremony and handed out roses in her honor. As folklore goes, in 1965, a 4-year-old named Ricky Weiss, upon hearing the name cystic fibrosis, cutely mispronounced the ailment, “65 roses.”

“This is the best group of girls I could ask to spend (senior night) with,” Willig tweeted after senior night. “I wouldn’t want to of spent the last four years with anyone else.”

While she already deals with so much, Willig has to be extra careful that she avoids others with CF. Cross-infection between two CF patients can come with serious risks.

Sadly, her best friend, Quinn Anlauf, also has the disease, so they must remain apart even when they’re together.

“I’m already used to the 6-feet rule,” Willig said. “If I see her in the store, we talk to each other from different aisles.”

Add to that the fact that Willig also is in a high-risk category for covid-19 and you might think she would be reduced to living in a bubble.

She stayed home for months, like many people did when the novel virus reared its head, but she has cautiously returned to school and soccer.

Willig braves through each day and does so without asking for pity. She has been shielding herself from germs all her life.

“The thing is, I have been using my elbows to open door handles for a long time,” she said. “It’s nothing new.”

Willig rallied so well that she has been offered a spot to play soccer at Geneva College. And don’t forget her other hobbies: downhill skiing and water skiing.

She also is active with Norwin’s Unified sports programs of track and field and boccie. She even still does the polar plunge.

While raising awareness of her affliction, Willig has long-term goals. For one, she wants to become a special education teacher.

“Syd is a giver and always wants to help people,” said Karcher, who is a life skills support teacher at Sunset Valley Elementary.

Willig’s mother, Lisa, is a principal at Hahntown Elementary School.

“I remember her mom saying she didn’t want Syd to get any special treatment,” Karcher said. “She would say, ‘Suck it up, buttercup.’ Syd is just so tough.

“She would have to stop in practice to catch her breath or run to the sideline to drink some pop, then come right back in. She is so mature and just handles everything so well.”

Norwin is known for various fundraising events, “Andrew’s Avengers” and the “Race for Grace” among them. Karcher said a future event will focus on CF awareness and Willig.

If you see people wearing purple T-shirts around town, you’ll know why.

Purple is the color symbolic of cystic fibrosis. Willig has even dyed her hair purple during CF awareness month in May.

“Now,” she said, “it’s become one of my favorite colors.”

Bill Beckner Jr. is a TribLive reporter covering local sports in Westmoreland County. He can be reached at bbeckner@triblive.com.

Tags: Norwin