A group of Bernese mountain dog owners came together outside the QEII Health Science Centre in Halifax Sunday morning in support of a Nova Scotia woman battling a genetic disease.
Chantelle Lindsay lives with cystic fibrosis, a fatal disease that destroys the lungs. The 23-year-old from North River, N.S., has been in the hospital for the past six weeks because she’s struggling to breathe.
Chantelle was diagnosed with cystic fibrosis when she was four months old and has been managing the symptoms her whole life, but now she’s on a ventilator and is fighting for her life.
“We’re just here today to offer support and get her story out there,” said Brenda Hatt, a friend of Chantelle’s family.
Chantelle’s family has been spending much of their time at the hospital ever since her conditions worsened. Her father’s been a Bernese mountain dog breeder for years, so Hutt says they could think of no better way to show their support.
“Chantelle’s been around (Bernese mountain dogs) her whole life,” said Hatt. “We wish she could see that we’re all here and (wish she could) come out for a little snuggle with them.
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“We know it would sure brighten her day.”
READ MORE: Cystic fibrosis is still the No. 1 fatal genetic disease for Canadian kids – here’s why
Cystic fibrosis is the most common fatal genetic disease affecting Canadian children and young adults. The average life expectancy for those living with the disease is just over 50.
Life-saving drug
Chantelle is in desperate need of a new drug called Trikafta, which was approved for use in the United States just last year.
The drug has the ability to treat 90 per cent of cystic fibrosis patient, but costs $300,000 per year and has yet to be approved in Canada.
“It’s like a cystic fibrosis miracle drug, more or less,” said Hatt. “One lady in Ontario has it and is on it right now with great success.”
Stephanie Stavros of Pickering, Ont., was the first person in Canada to be approved for Trikafta. She had to relentlessly write letters to executives and other top staff of Vertex Pharmaceuticals, the manufacturer of the drug, in order to receive approval.
Hatt says Chantelle’s family has been trying to do the same but has faced government red tape.
Chantelle’s been on the list awaiting approval for the drug for the past three weeks. Her family worries if she isn’t approved soon, she won’t have much time left.
“This drug is a matter of life or death,” she said. “Once they get to this point, this sick, they shouldn’t get there. The drug is out there, so get it.”
READ MORE: Ontario brothers fight Cystic Fibrosis, family pleads for equal access to drug treatment
Her family is calling on the supporters to continue to email and call Vertex Pharmaceuticals, the manufacturer of the drug, to try and get Trikafta to Chantelle.
A GoFundMe page has also been set up to help out Chantelle’s family, which has raised over $21,000 since Jan. 31.
With files from Global News’ Frazer Snowden.
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