For Katrina Secord, life hasn’t always been a walk in the park.
She was diagnosed at birth with cystic fibrosis (CF), a deadly genetic disorder mainly affecting the digestive system and the lungs of children and young adults.
There is no cure and when she was born, the average life expectancy for someone with CF was 18 years.
The persistence and ongoing infection in the lungs, with destruction of tissue and loss of lung function, will eventually lead to death in the majority of people with CF.
Being told she would probably only live to 18 isn’t something anyone wants to hear. Growing up in and out of the hospital, grade school wasn’t easy for Secord.
“I was very singled out. I looked different, I looked sick when I was sick,” Secord said.
“It was something that I was always really, really self-conscious of.”
Having different challenges daily, some harder than others, it started to wear on her drive to fight the disease and live a happy, fulfilling life. She became an angsty teenager.
“I didn’t see that there was going to be a future,” Secord said.
“Because that’s what I had been told since birth, that it’s 18 — so make right now count.”
Her medical team decided to reach out to Make-A-Wish Foundation to help lift her spirits.
Little did Secord know, it would change her life forever.
“When I was referred for the wish I was 14 and I just really hated being different. So this was all another reason for me being different,” said Secord.
“I was like, ‘I don’t want this at all.’ This is not something I cared about.'”
Meeting with the foundation in May of that year, her one wish was to go to Germany to meet her extended family. By August, Secord was on a plane to Deutschland, accompanied by her grandma, mother and two siblings.
“This organization did something for me and not my disease — just me,” Secord said with a smile.
“It was kind of what I needed to reinvigorate my spirit and just know that I’m more than my disease.”
When Secord returned to Edmonton, this new fire within made her want to fundraise as much as possible and help others.
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‘Over the years when we were fundraising so much, there are more drugs that are available and more treatment that is funded and more research done,” Secord said.
“So it almost became a race against the clock as I grew older.”
There are four drugs available in Canada to treat the disease, called cystic fibrosis transmembrane conductance regulators or CFTR modulators. There are Kalydeco, Orkambi, Symdeko and Trikafta.
Secord said she’s tried them all. She tried every treatment that came out, joined every study possible, took all the drug she was eligible for.
She was on Orkambi when Global News spoke with her in 2017, saying at the time it changed her life: she was able to work as a massage therapist, exercise, gain weight (something she struggled with) and plan for the future.
But the prescription cost $250,000 each year and her insurance coverage ended, prompting the then 25-year-old to beg the Alberta government to cover the cost. She began to backslide, losing weight and lung function.
The fundraising didn’t stop for her, though — she just did it from her hospital bed.
“Then about two years ago, I was really close to transplant and not making it entirely,” she said.
Secord said she tried Symdeko, and from there about two years ago switched to Trikafta — which she said of all the treatments, made her feel a million times better. Rather than just treating symptoms, Trikafta targets the basic defect from one specific genetic mutation that causes CF.
“These gene-modifying drugs came on the scene and really changed everything.”
It changed everything — so much so, Secord is now 30 years old and healthy.
CF has left its mark: her body is damaged with scar tissue and from undergoing surgeries, but Secord said her lung capacity is now at 65 per cent — the highest it’s ever been.
It’s a far cry from the 20 per cent of her lung function she struggled with a few years ago. It was so bad, she said her medical team began to consider preparing her to join the transplant list.
“I went from that to two years clean from hospital, no IVs, no antibiotics, and have stopped most of my treatment from this one gene-modifying drug that has made it possible for me to work.”
When she was born, a CF diagnosis was a death sentence. Now, life expectancy has improved to about 52 years of age as science has advanced. Secord thinks that will just keep increasing.
In 2021, the Alberta government announced for Albertans 12 years of age and older, it would start covering Trikafta — which costs about $300,000 a year, per patient. Last summer, it expanded coverage to kids aged six to 11.
Secord told Global News she is out of hospital and off other drugs, just taking a few Trikafta pills a day and able to work like a regular person. It’s not just a regular job though — it’s one which combines her passion of fundraising at a place that changed her life.
“The job posting came open for Make-A-Wish, and I said absolutely, I’m going home. Now, I’m home,” said Secord with a huge smile on her face.
She’s now a development officer with Make-A-Wish Canada and helps to make the dreams of other kids, including those with CF, come true.
With more than 321 wishes to fill across northern Alberta and Northwest Territories, Secord hopes to raise over $200,000 this year.
She’s focused on two fundraisers in the upcoming months: The Heroes Challenge on May 3 at West Edmonton Mall, which aims to raise $100,000, and the inaugural Make-A-Wish Grand Slam Slo-Pitch Tournament at the ballpark out in Devon. Teams are asked to commit to to raising $5,000 by game day, which is Aug. 25 – 26.
“We are the next generation of changemakers and people that are really going to make a difference in the world.
“And I think CFer’s are all fighters at heart.”
While she has focused so much of her life on raising money for others, Secord was recently told to get a retirement savings plan for herself — something she hadn’t planned on because she never expected to live long enough to use it.
“This is going to actually happen!” she laughed.
According to Cystic Fibrosis Canada, there are about 4,300 Canadian children, adolescents, and adults living with the disease.
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