TORONTO — Raising funds for cystic fibrosis (CF) has become Natalie Doyle’s life mission.
Her son, Liam, is almost three years old and was born with CF. Her daughter Madelynn, 4, was not, but she could be a carrier.
Her third child, Tristan, had CF. Tristan was born last September, but passed away shortly thereafter.
“I lost Tristan at 5-1/2 months. He was diagnosed with congenital heart disease and CF. When the kids ask where baby Tristan is, I tell them he is up in the stars and he is watching over you,” Doyle said sadly.
Both Natalie and her husband, Jamey, are genetic carriers for CF, but neither knew it before they had children. On May 31, Doyle will walk together with some 100 people at the second annual Carstar’s Great Strides Walk for Cystic Fibrosis Canada in Richmond Hill.
“Last year we raised $15,000. I am hoping to beat that this year,” Doyle said.
The event happens across the country the last Sunday in May. There will also be a walk at the Toronto Zoo.
“We have over 60 sites this year from British Columbia to Nova Scotia. We are hoping to raise $3.5 million nationally from all of the walks combined,” said Jessica Raposo, fund development co-ordinator for Cystic Fibrosis Canada’s Toronto area chapter.
Walkers raise funds for vital CF research, care and advocacy, initiatives funded by Cystic Fibrosis Canada to help find a cure or treatment for the disease.
CF is the most common fatal genetic disease affecting Canadian children and young adults. There is no cure. It is a multi-system disease affecting mainly the lungs and digestive system.
Symptoms can include difficulty breathing, respiratory tract problems, severe and chronic lung infections, impaired growth or weight gain, and extreme difficulty digesting and absorbing nutrients from food.
“Liam takes his enzymes. Without them he wouldn’t be able to digest the nutrients that he needs. He takes them with every meal and every snack.”
Doyle’s mother, bubbie Julie Parnes, watches Liam and his sister during the workweek.
“Mom does one of Liam’s therapies called CPT [chest physical therapy], where you tap on his front side and back for three minutes each, where his lungs are. This helps shift the sticky mucous. It gets done twice a day,” she said.
“When I look at Liam, I don’t just think of CF anymore. He is now becoming this independent boy – loving, caring, sensitive, sweet and very active. He knows why we do the therapy to keep him healthy and to keep his lungs healthy. He knows he must take his enzymes so his tummy doesn’t hurt,” Doyle said.
CF occurs when a child inherits two defective copies of the gene responsible for the condition, one from each parent. One in 25 Canadians is a CF carrier, but many people are unaware of it. When two carriers have a child, there’s a 25 per cent chance their child will be born with CF.
According to the Canadian Cystic Fibrosis Registry, in 2013, half of those who died of the condition were under 35. As well, 57 per cent of those newly diagnosed were under six months of age. It’s estimated that someone born with CF in Canada today has a 50 per cent chance of living beyond age 50, up from age 25 in 1983.
“The scariest part of this disease is that he is OK today, but in an instant everything can change. That is what I struggle with daily. I am constantly waiting for the other shoe to drop,” said Doyle.
Richmond Hill Mayor Dave Barrow will kick off the three-kilometre walk at 8:30 a.m. with a ribbon cutting ceremony at Mill Pond Park in Richmond Hill.
For more information, visit cysticfibrosis.ca.
