Aucklander Ben Prince-Saxon is pushing the boundaries of what's possible living with cystic fibrosis (CF), setting himself the challenge of 12 marathons this year in Aotearoa and Australia.
The 24-year-old is aiming to raise $25,000 for Cystic Fibrosis NZ, a charity organisation which supports people with the illness.
CF is a life-threatening genetic condition where people are born with a faulty protein which causes thick mucus to build up and compromise organs like the lungs, pancreas and digestive system.
Prince-Saxon estimated his lung capacity had been reduced by 30 to 40 percent because of damage caused by CF.
"I'm fundraising for Cystic Fibrosis NZ - they're part of my 'why' because they've done so much, not only myself but also my family and other families impacted by CF.
"I think it's only fair that I've now got this opportunity to do something somewhat extreme and give back to them for helping me through the 24 years so far."
A big part of why Prince-Saxon was even able to take on this feat is the drug Trikafta, which received public funding through Pharmac in April 2023 for people with CF aged six and over.
Photo: Nick Monro
He said the medicine, which inhibited the build-up of the mucus in his body, made an impact on his health overnight.
"Since Trikafta I've decided to take up running to help push the limits of CF and help try inspire other people living with CF to show them that now we can do these things and push our bodies to new levels."
Not only had the drug allowed him to attempt these physical challenges, it had also potentially extended his life by 27 years, according to medical experts.
"I was looking at a rough estimated life span of mid-30s to possibly 40s living with CF," he said. "Through 18 to 21, I felt my lungs slowly starting to hold me back from a few things.
"To now have 27-plus years thrown into the mix it's huge, because now I can plan a lot of things in my life."
Photo: Nick Monro
It was a similar story for about 360 New Zealanders with the condition who have started taking Trikafta. Despite that, challenges still exist for the more than 540 people in Aotearoa with CF - the drug was not effective for all people.
"When I allude to New Zealand is still behind the rest of the world, we still don't have Trikafta for our two- to five year-olds yet," said Cystic Fibrosis NZ chief executive Lisa Burns.
"That remains a really important priority for us along with expanded access to other medicines which also work for some people with different, rare mutations."
But funding for children under six is closer than ever, with Pharmac in January this year recommending to fund Trikafta with high priority for children aged two to five years.
"All funds that get raised make a real tangible difference to the programmes that we deliver," Burns said.
"The money Ben is raising will make an impact on the services and support that we provide for families and people with CF. It's the difference between someone like Ben being able to run marathons and train through the 'Breath for CF' grant or supporting a family with hospital support when they've on anti-biotics for two weeks at a time.
You can donate to support Prince-Saxon's charity initiative here.
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