Jaimie Harbin Keeping has lived with cystic fibrosis her entire life but has never let the illness hold her back.
At 23 years old, she’s an accomplished young woman: a research scientist with Nature’s Way Canada, an award-winning academic, a runner and a world traveller.
Shortness of breath, daily medication, percussion therapy and chest infections have always been part of the routine but never a distraction, she tells Global News.
“People would say to me, ‘I don’t understand how you do your mask and physios every day and how you take all of these pills every day.’ But I would just say it’s the same thing as me saying, ‘I can’t believe you brush your hair and brush your teeth every day,’” said Harbin Keeping.
She didn’t even consider herself to be sick — that is, until her second lung collapse and third surgery in February of this year. That’s when she started using an oxygen tank to breathe whose tubes are now laid out in a maze around her Halifax home.
About three weeks ago, Harbin Keeping learned she was a candidate for a double lung transplant in Toronto — the closest city where the life-saving surgery is offered. Two weeks ago, she learned that she was too sick to return to Halifax once got she there and would need to stay until a set of lungs becomes available.
The stay could cost her more than $4,000 per month.
“Prior to any of this, I would have thought, you know, why would somebody choose death over getting a transplant? Like, of course, get a transplant,” Harbin Keeping said.
“But now I’m seeing that some people, it’s not an option in terms of finances and a support system.”
Harbin Keeping counts herself lucky. An online fundraiser launched last week has raised more than $54,000 to support her journey, which she’ll make on May 13 with family and friends.
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It was difficult to share her story publicly, Harbin Keeping said, and even more difficult to rely on public support.
“We don’t really ask for help from people, we just deal with it and move forward, and I think the biggest thing has been realizing that this is bigger than us, and it’s actually been challenging for us to accept help,” she explained.
Harbin Keeping has now joined the ranks of Nova Scotian patients who have had to fundraise for life-saving surgery that’s only offered outside the province. The government recently raised the travel and accommodation allowance for such patients, but at $2,500 per month, it won’t cover all of her costs.
Harbin Keeping’s mother, Jennifer Harbin, says she’s disappointed the provincial government won’t consider offering the lung transplant surgery closer to home.
At the funding announcement on April 26, Health Minister Randy Delorey said low demand and the specialized nature of the service would make it too difficult to offer in-house.
“I am saddened to hear that for other people who maybe aren’t as unfortunate as us, that don’t have the support systems, that don’t have the employers that are flexible and supportive,” Harbin explained.
But at the end of the day, she says they’ll go anywhere and pay any price to get treatment for their daughter — and that the ability to do so makes them lucky.
“You only have to meet her for a few minutes to understand what’s she’s made of,” Harbin said in an April 26 interview. “And she has been, I know this is a cliche, but an inspiration to so many people. To me, she makes me want to push myself harder.”