Runner with cystic fibrosis completes 12 marathons in a year

A 25-year-old with cystic fibrosis is celebrating the completion of a year-long challenge of running 12 marathons in 12 months to raise awareness for the Cystic Fibrosis New Zealand organization. Just two years ago, he could barely exercise at all.

Key Takeaways:

Ben Prince-Saxon has cystic fibrosis, and two years ago, he struggled to breathe and exercise.
Thanks to new medications, he just completed 12 marathons in 12 months to raise awareness and funds for Cystic Fibrosis New Zealand.
Prince-Saxon raised over $25,000 for the organization to help patients and families.
The abortion rate for children diagnosed prenatally with cystic fibrosis is 94.6%, according to a 2019 study.

The Backstory:

Ben Prince-Saxon, a runner from Auckland, New Zealand, has cystic fibrosis (CF), a genetic condition that causes mucus in the body to be thick and sticky, clogging organs like the pancreas and lungs and making it difficult to breathe. Managing the condition involves twice-daily airway clearance therapies and multiple medications.

Medical advancements have helped extend the median predicted age of survival of those with CF from early childhood in the 1950s to age 65 for those born between 2020 and 2024. But a cure is still needed for everyone with CF, and Prince-Saxon set out to help make that happen... and to show what's possible when living with CF.

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"I have cystic fibrosis (CF), a condition that impacts my lungs and limits my daily life in many ways — but it won't stop me from achieving this," he wrote on this Give A Little fundraising page. "This year, I've set myself an enormous challenge: running 12 marathons in 12 months. This goal isn't just about pushing my limits; it's about raising awareness and crucial funds for Cystic Fibrosis New Zealand (CFNZ)."

The Details:

Prince-Saxon was looking to raise $25,000 and exceeded that goal, raising $25,720. He ran the final marathon of his challenge on December 7.

“It was an unreal feeling, something I’ve never felt before in my life,” he told Stuff about finishing his final run. “I’m extremely proud and extremely grateful, two years ago I never would have been able to imagine doing something like this, it’s amazing.”

Previously, Prince-Saxon struggled to exercise, but after beginning Trikafta, one of several newly-developed medications for people with CF, his health improved dramatically. Trikafta — along with Symdeko, Orkambi, Kalydeco, and Alyftrek — directly targets the faulty CFTR protein that causes CF.

“My life has changed drastically. I now run for fun and to better my health,” said Prince-Saxon. “Two years ago before I started Trikafta I could barely get through a sentence without breaking down coughing; it’s been amazing.”

Simone Brown, executive lead of CFNZ, said, "Ben has turned a personal journey into something that's lifting an entire community. Every kilometre he has run helps make cystic fibrosis visible, and every dollar raised means more wrap-around support for Kiwis who are navigating a demanding condition every day."

Now that the marathon challenge is complete, Prince-Saxon has a new goal in front of him: to become the fastest person with CF to complete a marathon.

The Bottom Line:

Tragically, parents of children who are diagnosed with CF while still in the womb often face pressure to have abortions.

In research published in 2019, a 94.6% abortion rate was found when testing showed two pathogenic variants in a baby whose parents were both carriers of CF. The abortion rate is 65% for babies who received a CF diagnosis based on an intestinal blockage detected during an ultrasound.

"[Abortion] and caring for a child with CF were both associated with poor short-term parental psychological outcomes," researchers wrote. "Ethical analyses indicated that informed decisions should have been the main endpoint, rather than CF-affected births prevented."

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