Naked ambition behind 30km high bike ride

It was a single phone call, 20 years ago, that upended the neat life my wife and I had made together. Like all new parents, we were already sleep-deprived and feeling out of our depth due to the birth of our first child three weeks earlier. So we certainly weren’t in the best psychological state to cope with the news that was to follow.

Up until that point we had missed the only hint that our beautiful daughter was anything other than ‘normal’ - she tasted salty when kissed. But then neither of us were expert in ancient folklore:


The call was requesting we come to the hospital for a sweat test. Heel prick screening had shown our daughter might have cystic fibrosis (CF) and she needed a sweat test, which is still the definitive test for CF today. We were told there was a 75% chance she didn’t have the disease but it didn’t take much research online to discover the folklore and so, deep down, we already knew.

CF is a cruel disease. As a baby you start out just like any other but your salt pathways are stuffed so salt doesn’t get where it needs to be. And you really need salt in the right places for the body to work as it should. The main problem is in the lungs where the mucus that lines the lung wall becomes thick and sticky. Foreign particles you breathe in become trapped and the mucus provides the perfect protective barrier for growing bacteria. Repeated and chronic infections cause lung capacity to decrease over time until, without a lung transplant, you literally can’t breathe. When Rachael was born her life expectancy was 30. Many people with CF didn’t make it to 18.



20 years on I can rattle off all the details and statistics. Back then, each new revelation about CF (it doesn’t just affect the lungs) was a new bombshell on the rubble of our upended lives. Overly dramatic? Perhaps. But that is genuinely what it felt like at the time. Depression and anxiety are more common among parents of a child with chronic illness. Hardly surprising when some people with CF spend 50% of their time in hospital.

Fortunately for me I was already in the habit of mountain biking at lunchtimes with a great crew. There is nothing like a couple of hours on good trails with good friends on the bike to reset your perspectives and ground you back in reality - this was a life-saver for me.

Our other way of coping was to ignore it as much as possible. We would make sure Rachael had her medications and we’d do up to 2 hours of physio a day. But, unless our heads were physically yanked out of the sand by another hospital admission, we just couldn’t cope with any more reminders of the impact of CF on our lives. So we avoided being part of the CF community.

Over the years while we’ve become expert in areas we never expected or wanted to be expert in (administering intravenous antibiotics at home, for example). we’ve also discovered our lives are very different to our worst-case expectations from our darkest days after the diagnosis. This realisation has given us the strength to be involved in and contribute back to the CF community.


I’m now chairperson of CF Otago and as a result another of the unexpected areas I’m now expert in is bubble making (like daffodils for cancer, bubbles are a symbol for CF here in New Zealand).

Recently my wife and I towed a coffin and a skeleton called Hope by tandem from Dunedin to Wellington to raise awareness about the lack of funding for modern medicine.


And now I’m aiming to ride an average 1,000 vertical metres every day for the month of September to raise money for CFNZ as part of their Sweatember campaign. It’s a great cause as the money goes toward all areas of support including much needed medical equipment, field workers and advocacy. I’d really love your support, if you’re not in a position to donate, even sharing this link to my campaign page helps. And this is your one and only chance to make me ride naked!


The good news is that there is hope on the horizon. 20 years ago the life expectancy was around 30, now there are some fantastic new medicines available that can correct the underlying cause of CF. The bad news is these amazingly effective drugs are eye-wateringly expensive - USD $311,000 per year per person (that is not a typo). So until everyone who can benefit has access to these treatments at a reasonable cost, I doubt this is the last you’ll see of me doing crazy stuff out on the trails.