By CATHY WITHIEL

Seven-month-old Katie Tookey was born with a rare condition affecting one in 15,000 babies. The ducts in her liver are blocked.

Katie's condition was diagnosed at six weeks. Two weeks later she had seven hour life-saving surgery to remove a part of her intestine so the liver could drain directly into the stomach.

The operation has a 50/50 success rate but without the surgery Katie may not have lived beyond about eight months.

The disease is progressive and there is already damage to her liver. Katie could continue months or even years without needing a liver transplant, but she will definitely need one.

Dad Andy Tookey is a technical support expert at Westlake Girls High School whose business is fixing things.

"But here is something I couldn't fix. I couldn't mend my beautiful little girl."

In his own practical way, Mr Tookey has set about trying to change and fix the system so that not only his precious Katie has a better chance of getting a liver, but also all those in the same predicament have greater hope of getting lifesaving organ transplants.

He's discovered, to his dismay, there is a lack of donors in New Zealand and that while liver transplants can be 95 per cent successful, 40 per cent of patients die while waiting for a donor.

A patient needs to be critically ill to make it on to the organ transplant list. Some by then are too ill to cope with the new organ and the surgery.

He discovered that New Zealand has one of the worst organ donation rates in the world, at 10 donors per one million people. The only two worse are Poland and Greece. Spain leads the way with 39 donors per million people.

"We've got some of the best medical transplant specialists in the world, but they can't do any operations if they don't have organs," Mr Tookey says.

He says under the current system, consent to be an organ donor is done only through a driving licence.

He argues that many people aren't aware of the acute need for organ donors. And even if they are made aware, it's a hassle and an expense to change the information on their licence to include donor information.

Mr Tookey wants the Land Transport Safety Authority to set up a data base of donors, so people can simply phone in with their details to be included.

He also wants a system similar to Britain's which has organ donor cards readily accessible and displayed on counters in outlets like banks, post offices or chemists, and people can sign them and carry them in their wallets.

These cards, to be printed and paid for by the Government, should be in addition to the drivers licence data bank system, he says.

"These cards must be accessible. People won't go out of their way to get them."

He also wants to promote greater awareness of the need for organ donors. He thinks families should talk about the issue.

Mr Tookey has written letters lobbying Members of Parliament, health authorities and the Government. He has had very few replies.

There's a sense of urgency in his campaign. Katie is very susceptible to illnesses and can't mix freely with other babies who may pass on infection. Every two months her blood is tested to see how her liver is functioning.

It's a harrowing two monthly ordeal for Mr Tookey, mother Janice and big brother Bradley, 8, who constantly watch closely for any signs of yellowness in her features.

After her operation, Katie turned yellow and was so sick her parents spent nights sleeping at Starship Children's Hospital keeping vigil as she fought for her life. But despite her illness, Katie is a happy baby.

A practical man, Mr Tookey is clearly not used to talking about his emotions.

"Having a sick little girl like this is a huge mental strain. It's hard to get close to her, because you fear you'll lose her. And when you try to keep your distance, you feel bad.

"No one will ever know what it is like to be in this position until you actually live through it. It's always in my mind that we could lose our little girl."