Giving CFers a leg up

Cfer and businessman Mark Passey.

Even when he was diagnosed with a life-changing and potentially life-ending disease at six years old, Mark Passey’s parents didn’t cut him any slack.

“I don’t think anyone with cystic fibrosis wants to be treated any different ….or seen as weak,” says the Tauranga businessman.

“The reality is, it’s a nasty disease but you just deal with it because you don’t have a choice. No different to someone with cancer – you can’t say no, I don’t want CF today.”

The Weekend Sun is in Mark’s company boardroom in a second-floor Devonport Rd office – glorious 180 degree vistas of the harbour, the sun dancing on the harbor; the world is good. Mostly.

Because there’s 50 tablets a day to be ingested, sometimes setting an alarm clock for the middle of the night to medicate; or being rigged up to an intravenous drip at ‘home hospital’; or 10 serious courses of antibiotics a year; or hospital, simply because you get sicker than most people if you get an infection.

“But my parents refused to treat me any different to any of my brothers. That’s how they wanted it. And even though I would have to go into hospital, they didn’t make any exceptions.”

It was just ‘harden up’. “And to be fair, it’s what I wanted.”

Cystic fibrosis is the most common life-threatening genetic disorder affecting New Zealand children. There are 500 New Zealanders living with CF and another 20 born with CF each year. It affects a number of organs, especially the lungs and pancreas by clogging them with thick, sticky mucus. In the lungs this can cause shortness of breath, a chronic cough and repeated chest infections.

Mark was blessed – CF didn’t claim too many of his school days – so he ended up at university and owning a chunk of the company Telfer Young – the home and property valuation business. Now he wants to give back.

“Back to those who, in terms of education, won’t have the same opportunities as I did.” So the businessman’s establishing a scholarship. “We’re thinking three to five thousand dollars a year to each recipient – a CFer or a volunteer.” The criteria hasn’t been established yet but he doesn’t care if they want to start a business or go on holiday. “Do whatever, I just want to make life a bit easier for some people.”

And he says it’s amazing what’s come out of the woodwork. “When I put my hand up to provide the scholarship a lot of CEOs said they’d like to come on board too.”

The first recipient will be announced during CF Week, this time next year.

It’s almost as if Mark is living a lie – he presents as a relatively robust, ruddy, healthy-looking individual.

“I’ve had my times but not like Nikki Reynolds-Wilson or Kristie Purton. “ They’re Tauranga-celebrated ‘cystic sisters’ who, before their lung transplants, appeared frail, had incessant hacking coughs and spent one in three weeks in hospital.

“That’s one of the things about CF – the general public have no idea. It’s not an obvious deformity. People may think you just have the flu but unfortunately, behind closed doors, it’s a lot more extreme than just lying in bed for a couple of days waiting to get better.”

But, he says, some of his employees wouldn’t know he was a CFer, not that it would matter to him if they did.

If Mark gets an infection, it keeps him bedridden. “If you go into hospital, there are some pretty serious antibiotics, usually intravenous, and you might spend a couple of weeks in hospital.”

He tries to stay out of hospital. He admits to being a pretty bad patient – definitely a non-compliant patient.

“But, unfortunately, for most CFers hospital is more the norm.”

Mark takes a hardline, no-nonsense line with his disease. “Of course it would be great not to have CF, but you can’t afford to think like that. I have been dealing with this since I was six. And no, you can’t live your life being scared of it.”

He likens CF to walking out on the street without looking both ways. “You are just as likely to get hit by a bike, a car or a bus. And you probably aren’t going to walk away from two out of three of those.”

When Mark was at school a sympathetic teacher, a parent of another CFer, told him he didn’t have to do anything he didn’t want to. It could have given Mark a soft out. Instead it drove him.

Because the schoolkid with CF became the university graduate and businessman who did the Oxfam 100 kilometre run/walk, the annual road trek Variety Bash, along with indoor netball and football.

“I wouldn’t put myself in the stubborn, resolved category, but I am sure a lot of people would.” It has served him well. And others perhaps. Because he hasn’t let his illness get him down, although it’s pushed him to the limits. “That’s for sure.”

“There’s all this doom and gloom. CFers go to the doctors and see a lot of negativity about life expectancy and treatments. But hey, there’s actually people living with CF, accomplishing things and living pretty normal lives. You can get out there and achieve whatever you want really.”

Mark has. And he aims to give someone else the same opportunity.