Normal life for kids
Paul Norfolk wears his heart on his sleeve but it's kidneys he's crazy about.
The Kidney Kids chief executive is a straight talker when it comes to challenges faced by the children and families supported by the organisation he works for.
He recalls the story of Mya Tamatea, a little girl from Whanganui with no kidneys, who spent two years "attached to a machine" at Starship children's hospital while her family stayed at Ronald McDonald House.
All Mya wanted to know after her transplant was whether her long hours of dialysis were finally over.
"What does that tell you? That machine had taken away everything from that child," Mr Norfolk says.
Kidney Kids is working alongside the Mad Butcher and Suburban Newspapers Community Trust to raise $132,000.
The money will buy four haemodialysis machines to be installed in the first-ever dedicated Paediatric Haemodialysis Unit at Starship.
It will enable children like Mya to get their treatment in the best possible way.
Kidney disease affects 1500 children across the country with one-third living in the Waikato, Auckland and Northland regions.
"I'm passionate about these kids. I want to see them develop and grow into young adults and have normal lives," Mr Norfolk says.
There were 78 people under 24 on dialysis in 2010.
Only 14 youngsters were lucky enough to receive a kidney transplant that same year.
That's a scenario Mr Norfolk sees too often and he's urging Kiwis to think about the plight of those children waiting for organs.
Figures released last year show New Zealand has the lowest organ donation rate in the Western world – except for Greece.
Health Minister Tony Ryall announced this month that $4 million will be spent boosting donor rates.
Mr Norfolk reckons that's a step in the right direction but he wants to see it taken further.
"I think one of the things that needs to be looked at is the organ donor list.
"Your family can still come along and say no – even if your driver's licence says you're a donor. We've got to change that."
Organ Donation New Zealand chief executive Janice Langlands agrees more dialogue is needed.
"People are more likely to accept organ donation if they've had a discussion around it and are aware of a family member's wishes."
Her organisation advocates providing the right information to make a decision "that people can live with for the rest of their lives".
Mr Norfolk agrees discussion is vital but wants more certainty so that kids like Mya – she's now 11 – have a shot at living normal lives. "We've got to get parents and people talking about it so that final wishes are upheld. That's my firm belief."
Mya and her family now live in Australia but she and others like her will always be part of the Kidney Kids family.
"Even after they've had a transplant we'll always look after them," Mr Norfolk says.