Carmen Bird, Kavel Mudaliar
Without fail, at least five days a week, Ben Prince-Saxon laces up his running shoes and hits the pavement. But he’s not just running for himself. He’s running for every other Kiwi living with cystic fibrosis, just like he is. And his mum Raewyn couldn’t be prouder.
12 marathons 1 mission
“I’m inspired daily by Ben to be a better person and do what makes me happy in the moment,” beams Raewyn, 56.
This year, 24-year-old Ben has set himself the challenge of raising $25,000 for Cystic Fibrosis New Zealand by running 12 marathons in 12 months. It’s an ambitious goal, especially considering he couldn’t get through a single sentence just two years ago without coughing.
Cystic fibrosis is a genetic condition affecting the lungs and digestive system. Where mucus build-up can cause significant issues, including difficulty breathing and chronic lung infections. In April 2023, the life-changing medication Trikafta was funded in New Zealand. Extending patients’ life expectancy by an estimated 27 years, something Ben’s determined to make the most of.
“When I found out about Trikafta, one of the first things I did was write a 10-year plan, because now I can plan that far ahead,” says café manager Ben, whose life expectancy before this treatment was his mid-thirties. “I have all these extra years to live for!
“It makes a huge difference. Before Trikafta, I was coughing every two to three words. Now I can do this interview without coughing once, I can build endurance in sport, I can gain weight more comfortably and I can breathe through my nose, which I hadn’t been able to do since I was 19.”
For devoted mother Raewyn, the difference in her son is monumental.
A mothers instinct
“It’s been beautiful for me to just watch Ben take everything in his stride and do the utmost he can with the gift he’s been given,” she smiles, finally at ease after years of worrying.
Ben was four when he was diagnosed with cystic fibrosis after many infections and hospital visits with no clear answers.
“As a mother, you always pick up when something is not quite right,” an emotional Raewyn recalls.
“Ben was sick a lot. His diagnosis would be, ‘Ear infection – here’s antibiotics, lung infection – here’s antibiotics.’ Once at hospital, we were told he was just dehydrated, take him home and he’ll be fine.”
It reached breaking point one day when Raewyn looked at her seriously sick preschooler, unable to do anything but sleep, and felt genuinely terrified she was going to lose him. Back at the doctors and desperate for answers, she was told, “Your son’s hardly breathing. You need to get him to Starship now.”
After being admitted, the family finally found a doctor who took their concerns seriously and within a week, Ben was diagnosed with cystic fibrosis. From there, the family committed to daily physiotherapy and medications to manage his health, but made a conscious decision not to tell Ben what he was living with.
Running his own race
“We wanted him to be a normal child,” office manager Raewyn explains.
“We didn’t want anyone looking at him like he had something wrong with him.” Adds Ben, “My life has never been based on living with cystic fibrosis. I never felt in my childhood that cystic fibrosis ever limited my possibilities.”
At around 15 years old, he suspected there must be a reason he had to do daily chest exercises and take medication his peers didn’t seem to need. Through his own research, he discovered he had cystic fibrosis and took control of his health.
“Now running is my chest physio,” says Ben, who one day dreams of being the fastest person with cystic fibrosis to run a marathon. “It gives me health, it also gives me the possibility to push those extra 27 years further.”
Sharing his daily progress on social media, Ben’s ticked off five marathons this year. The highlight to date was organising one himself up and down Auckland’s Ta¯maki Drive in February.
“I had no idea how many people would come,” admits Ben.
“It was incredible to see the faces that came to support me.”
Raewyn continues, “It’s absolutely awesome for him to be setting himself a big challenge. What gets me the most is that he’s doing it for an organisation that has supported us through our journey and many others.”
To donate, head to givealittle.co.nz/ fundraiser/12-in-12-months-for-cystic-fibrosis-nz
