KITCHENER, Ont. — Amber Shewfelt is just another student as she navigates the halls between classes on a grey, damp Monday morning.
Teachers and classmates say hello and one enthusiastic friend leaps on her back, gives her a quick hug and disappears into a sea of teenagers.
Nothing out of the ordinary.
Later that same day, Shewfelt, 17, is just another player as she hits the ice with the Bluevale Knights for a Waterloo County high school hockey game against the visiting Southwood Sabres.
The Grade 12 student wears the captain’s “C,” but that is the only thing that sets her apart as she patrols the wing on a line with her younger sister Logan and Kaitlyn Hanson. The trio has been dubbed “The Sister Line” because Amber dates Kaitlyn’s brother Derek.
Nothing strange about that.
From the outside, Shewfelt is the picture of health — an attractive, athletic teenager with a bright future ahead of her.
Her insides tell a different story.
Shewfelt has cystic fibrosis, a genetic disorder that affects the respiratory, digestive and reproductive systems, attacking the glands that produce mucus, tears, sweat, saliva and digestive juices. She was diagnosed when she was only two years old when her parents Tracy and Darren took their daughter to a doctor to find out why she wasn’t gaining weight.
The disease creates a delicate balancing act for an outgoing teen who wants to lead a “normal” life while at the same time doing all she can to raise awareness about cystic fibrosis in hopes that one day a cure will be found.
“I just want to fit in and feel normal, to have the energy and time to hang out with friends and I want to succeed in life. I see it as my responsibility to spread the word on what CF is and promote awareness,” she said.
“If people see a coin box in the mall, I would hope they’ll throw their extra change in there because they know what it’s about. If I helped do that, it’s worth it.”
Bluevale teacher Beth Wolf, who coaches the girls’ hockey team, admits she knew very little about cystic fibrosis when Shewfelt joined the team in Grade 10. It wasn’t until a conversation with a teaching colleague that she came to learn what the young player went through on a daily basis to survive.
“She just wants to lead a normal life and she’s got such a great understanding of what life is all about. She’s a strong leader, a great voice in the change room, and she knows what is right and what is wrong,” said Wolf.
“She told me when I started to coach here that she had CF like it was no big deal. I have learned a lot since then.”
Shewfelt has been educating others for years.
She has inspired others at the annual Shinerama pep rally for the past five years at Wilfrid Laurier University and she’s spoken at a number of golf tournaments that, like Shinerama, give financial support to cystic fibrosis research.
Along with her mother, she also sits on the committee that plans the annual fundraiser for the Kitchener and Waterloo district chapter of Cystic Fibrosis Canada. Shewfelt has been entering a team in the Great Strides Walk for years and “Amber Shewfelt’s Super Striders” have raised more than $90,000, she estimates.
She tries to remain upbeat at all times, but Shewfelt admits there are times when her struggles get the better of her.
“There are times when I’m sick or get tired of doing my treatments and I just wish I could go out ... it just builds up and sometimes I get frustrated,” she said, fighting back tears.
“But I tell myself there are people in worse situations ... there are always people who are worse off than I am.”
Shewfelt wears a mask for 20 minutes every day that circulates antibiotics and medications into her body. Every second month, she must wear a second mask with different medications for 30 minutes a day.
There’s also a jacket she must wear for 30 minutes every day that bangs on her chest to loosen mucus. She doubles the dosage to two sessions when she’s not feeling well.
There are also pills that she takes with every meal or snack — 12 to 14 a day.
And, of course, a puffer is always at hand when she’s playing hockey, field hockey, lacrosse or soccer. With the support and encouragement of her parents, she’s been active in sports for as long as she can remember. An active lifestyle is encouraged for CF sufferers and Shewfelt takes that to the extreme. She was hoping to get out and do some snowboarding during the Christmas break.
“A positive attitude is everything and my mom and I have been saying that since I was little. In my speeches, I talk about how we shouldn’t look at the quantity of life; we should look at the quality of life,” she said.
“So those are words I try to live by, to stay healthy and have fun and enjoy the life I have.”
She also credits her closest friends with helping her through difficult times and takes time to mention Olivia Wagner, Sydney Peister, Aileen Hodgson and Kelty Apperson by name.
Shewfelt’s short-term plans include studying criminology at Wilfrid Laurier University’s Brantford campus, in part because she one day hopes to sit down with the bad guys and figure out how they tick.
Down the road, she hopes to experience other joys that some take for granted, like getting married, having children and travelling to sunny destinations.
The median age of survival for Canadians with cystic fibrosis was estimated at 46.7 years of age in 2009, according to the Cystic Fibrosis Canada website. As recently as the 1960s, most children with cystic fibrosis did not live past pre-school age.