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Saint John group holds walk to raise funds for cystic fibrosis research
A group in Saint John is doing its part to raise money and awareness for the most common fatal genetic disease affecting young children and adults.
More than 4,000 Canadians are now living with cystic fibrosis (CF), with 400 living in the Maritimes.
Saint John’s Tiffany Wilson lost her son to the disease when he was only four months old. Her three-year-old daughter also lives with cystic fibrosis.
“The actual odds of having a child with CF is actually only 25 per cent, but just the way the ball rolls I guess," says Wilson, who is also president of Saint John's CF chapter.
Wilson's daughter was diagnosed prenatally. The disease creates a buildup of thick mucus in the lungs and digestive tract, making it difficult to breath. It also robs patients from absorbing the nutrients in food.
"I had a double lung transplant three years ago, so that was kind of different,” says Carrie Lord, who lives with CF. “Never thought I would have to have one.”
Lord was diagnosed when she was born. She says her symptoms got worse with age.
“Sometimes you can get tired easy and shortness of breath," she says.
These days, Canadians with CF are living longer lives thanks to treatment developed over the last five decades. But often times families have to pay out of pocket.
"With certain medical plans, they won't cover the average 80 per cent of the medication that she requires,” says Wilson. “The New Brunswick program, if you have any kind of coverage, you're denied."
That’s why Wilson says fundraising walks like Sunday’s are so important. And with a brand new local chapter and president in Saint John, they plan to do more.
"If we don't have walks like this to raise money, then unfortunately we would see more people passing away from this disease," says Wilson.
With files from CTV Atlantic’s Mary Cranston.