There is no cure for the condition, which affects about 500 New Zealanders, but Trikafta treats its underlying cause and makes it more manageable.
Before the drug, her health was “getting pretty bad pretty fast”.
“I was in my early 20s, so there was lots of living I wanted to do and keeping up with all my friends. I was just living life the most I could, but obviously that took a toll on my health.”
Parsons was living in England in 2018 when she gained access to Trikafta through a drug trial with supplier Vertex.
After taking the “life-changing” drug, “all of my symptoms kind of just dropped away within the week”.
“It was like being picked up and put in a brand new shiny body where everything worked …
“It’s changed my life drastically, and it’s amazing to now be preparing to do an endurance race.”
Parsons continued access to Trikafta through Vertex once she returned to New Zealand in 2021.
She gained public access after Pharmac began funding it for people aged 6 and up in April 2023.
Last month, the agency announced provisional Trikafta funding from April 1 for children aged 2 to 5 with cystic fibrosis.
Competing in Ironman
Parsons’ goal was to become the first New Zealand woman with cystic fibrosis to complete an Ironman at the March 7 event in Taupō.
Athletes would complete a 3.8km swim, 180km cycle and 42.2km marathon run.
For Parsons, an IT professional by trade, competing in the iconic event was a “full-circle moment”.
She said Cystic Fibrosis New Zealand (CFNZ) was the charity sponsor of Ironman New Zealand when she was younger.
As a teenager, athlete Patrick Bristowe was her “Ironman buddy”, and she ran down the finish chute alongside him.
Watching Ironman as a child was “quite an inspiration”, she said.
Kirsty Parsons is training 12 hours per week, sometimes more, for the Ironman New Zealand race in Taupō on March 7. Photo / Grace Lowry
Completing it would prove she had “all the capabilities of a normal healthy person and I’m not limited by CF”.
“It would be really cool to … motivate other young kids with CF to stay healthy, and that they can totally have these goals.”
Parsons said she was training about 12 hours per week, sometimes more.
In the past month, she had swum 16km, cycled 640km, and run 83km.
As a Taupō local, she felt fortunate to train on the course.
Parsons said it would mean “a lot” to her to cross the finish line, but it may “almost mean more” to the family and friends who supported her throughout her cystic fibrosis journey.
“Mum and Dad were so supportive growing up, and it took a huge toll on them.”
Her mother had since died, “but for Dad to see me do this would be a huge achievement for him and make him really proud”.
Her brother, Duncan Parsons, would be racing alongside her.
Parsons was using her Ironman campaign to fundraise for CFNZ.
Kirsty Parsons has been taking Trikafta since 2018. Photo / Grace Lowry
She was almost halfway to her goal of raising $10,000, and was considering increasing it to $20,000.
She acknowledged CFNZ’s work and advocacy in getting Trikafta funded, and the support it gave people with cystic fibrosis and their families.
CFNZ executive lead Simone Brown said that adults in the cystic fibrosis community continued to push boundaries and set incredibly high bars for achievement.
“It not only demonstrates the strength and resilience of living with cystic fibrosis but shines a bright light on the potential life and future that our younger generations can look forward to and be inspired by.”
She said they would be cheering Parsons on “all the way to the finish line”.
“This is such an exciting moment for our community.”
To support Parsons’ fundraising, visit her Givealittle page.
Megan Wilson is a health and general news reporter for the Bay of Plenty Times and Rotorua Daily Post. She has been a journalist since 2021.