More than 100 people lace up for cystic fibrosis walk in London, Ont.

12-year-old Kaylee Chappell and her mother Alysia Chappell take part in London's Walk to Make Cystic Fibrosis History at Greenway Park on May 26, 2024. Kaylee sports the blue and white scarf to let people know she is a child participant in the walk who lives with cystic fibrosis. (Bryan Bicknell/CTV News London)

At just 12 years old, Kaylee Chappell already knows what it’s like to live with a debilitating disease.

“It’s hard at times because of constantly having to do treatments to make sure I can breathe, and obviously the feeling of being different, especially at this age when I’m already feeling awkward,” said Kaylee.

You wouldn’t know it from looking at her, but Kaylee has been dealing with cystic fibrosis (CF) for most of her life.

CF is a genetic disorder which impairs the normal clearance of mucus in the lungs. It is the most common fatal genetic disease affecting Canadian children and young adults.

There is currently no cure.

Surrounded by her friends and family, Kaylee took part in London’s Walk to Make Cystic Fibrosis History at Greenway Park on Sunday. The walk is CF Canada’s largest fundraising event, and this year is the event’s 20th anniversary.

Kaylee’s mother, Alysia Chappell, who has been the walk coordinator for the past 10 years, said approximately 125 people took part in the four kilometre walk.

According to Alysia, organizers are expecting to raise $43,000.

“The money goes to support all kinds of great things. Some of the money goes to the clinics across Canada that support adults and children with cystic fibrosis, and some of the money goes to research for new treatments or controls for the disease,” she said.

The good news is there have been enormous strides in the fight to make CF history, according to paediatric respirologist Dr. April Price of Children’s Hospital at London Health Sciences Centre.

“If we catch it early, as we do now with our paediatric patients, and stabilize them, and ask them to do some treatments that clear out their lungs, then they actually are able to live full lives,” Dr. Price explained. “We talk about cystic fibrosis as being a life-limiting disease, but now that we do newborn screening, and we have caught it actually at three weeks of life.”

Price explained that about one in 20 to one in 25 people are carriers for the disease, and if two of those carriers come together there’s a one in four chance of having a baby with CF.

Currently, approximately 4,400 people across Canada have the disease.

As for Kaylee, she was named the top youth fundraiser at Sunday’s walk, coming up with more than $1,300 herself. She was delighted to see all the people taking part and showing their support.

“And just all be together to help find a cure for this disease, it makes me feel good. I let people know what I’m going through, and that they are helping,” said Kaylee.