Spreading goodwill and understanding

Nikki Wilson and Kristie Purton were looking to do something nice for someone, so they hid ‘scratchies' in the books in the library. That would have been a nice surprise.

Then they taped a sprinkling of coins to the vending machine at Tauranga Hospital, with a note saying 'This treat's on us”. That too would have been well received.


This one's on us: Nikki Wilson and Kristie Purton pay the parking charge. Photo: Bruce Barnard.

They also paid the $2 toll charge for a random motorist at the Route K turnpike. That gesture set them off.

'They chased us down the road tooting and waving. People just don't expect it,” says Kristie.

That sets off a chorus of laughter, wheezy laughter and cracking tell-tale coughs – the sort of cough that signals something sinister going on.

And it is. Nikki and Kristie are sisters fighting something that will eventually overwhelm them. It's cystic fibrosis – a genetic disorder causing severe damage to the lungs, the pancreas and digestive system. It's a slow killer and there's no way back.

But Nikki and Kristie are matter of fact and fatalistic.

'If I decided against a double lung transplant, I would have a couple of years left. With a transplant, another three to seven years. But no guarantees,” says Nikki. She is now on an active waiting list for the transplant.

But Nikki's just a wee mite. 'I am going to have to wait until they find some small lungs – some that will fit me,” she adds.

Doctors told Kristie's parents when she was four she would probably survive only into her late teens. She's 32 now. That's the blessing of better screening and treatment – people living with cystic fibrosis are living longer, sometimes into their forties.

An uncomfortable topic

They sense this reporter's unease at all the talk of death and dying.

'We have lived it and talked about it all our lives,” says Kristie.

It tells you something when the chat moves seamlessly from mortality to carrot cake and more good deeds.

'A teacher made us this huge carrot cake so we dropped that off at Accident and Emergency. They're cool at A and E.”

They're also like family. Because the Cystic Sisters, as they call themselves, have one week of generally good health, the next unwell and the third in Tauranga Hospital.

'We kind of tag team it. I will get sick and then she will get sick. We catch each other's bugs and end up in hospital. We rotate it.”

They are good users of the public health system and grateful users, hence the cake. Wasn't that a sweet thing to do?

The cake was just one kind act in 65 days of kind acts. '65 good deeds for cystic fibrosis” explains Kristie. So two people who struggle through each day, their bodies steadily closing down, doing a nice turn for others every day.

Number 65 because that's the cystic fibrosis catch cry – '65 roses.” A lot of people, and especially kids, can't get their mouths around cystic fibrosis. 'But if you say '65 roses' fast it sounds like cystic fibrosis,” explains Kristie. Try it, it does.

It's an awareness thing – they have another five weeks of doing something special for someone every day. It'll end during Cystic Fibrosis Week on August 17.

'People know more about CF these days,” says Nikki. 'More than they used to, but still not much.”

Cystic fibrosis affects the cells that produce mucus, sweat and digestive juices. A defective gene causes the secreted fluids, which are normally thin and lubricating, to become thick and sticky.

This plugs up tubes, ducts and passageways, especially in the lungs and pancreas. In the lungs, this causes breathlessness.

Nikki's lungs work at 20 and Kristie's at 30 per cent.

'Can you imagine what it would be like trying to breathe through a straw?” says Kristie.

There's the chronic cough. 'That goes 24/7 for us,” says Nikki.

And if the pancreas is affected it'll reduce the release of enzymes required to digest food, causing poor weight-gain and malnutrition.

CF is a catalyst for other problems. As the CF takes hold the sufferer develops more and more related problems.

'Because I have poor oxygen intake, I now have signs of heart failure,” says Nikki. 'And I have diabetes and asthma,” adds Kristie.

Is there anything working properly? Yes there is.

'I was told that being a CF'er I would never have kids.” Kristie proved them wrong. Three times she proved them wrong. And Nikki is a mum of one.

'So everything's working in that department,” says Kristie.

Odds forever out of favour

But it raises an obvious question, because CF is a deadly game of odds.

If both parents are carriers, the children would have a 50 per cent chance of manifesting the disease. And yes, their children will carry the CF gene, but their husbands don't, so the kids are fine. But back to 65 good deeds.

Isn't this all about face? Shouldn't we be doing nice things, 65 days of good deeds for the Cystic Sisters? Aren't they the ones who could do with a little joy, a little love?

And that's what everyone says, apparently.

'We were looking at ways to get our message out there, to improve awareness and at the same time do good things for people,” says Nikki.

'We've had lots of people and friends do nice kind things for us and this is our way of giving something back.”

There's a saying that every honest, good deed comes with a positive feeling to do more good deeds, so the Cystic Sisters' work may not be done on August 17.

Cystic Fibrosis is the most common life threatening genetic disorder affecting New Zealand's children.

There is no cure, but the affected gene has been identified and researchers are working to find ways to repair or replace it, and also on medications to treat CF complications.

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