Living and loving goes on for the Terpstra's

Rein and Willie Terpstra value each day they have together. Picture / Rotorua Daily Post

It is Christmas as usual at Willie and Rein Terpstra's home in Rotorua. "As soon as the kids come home, Willie will be mummy again, organising everything," says her husband. "She still does the cooking like nothing happened. And she still pushes me round."

It's a measure of how ill she is that he considers her bossiness a good sign.

This, remember, is the woman who was given two to three years to live when she was diagnosed with motor neurone disease (MND) in May 2004.

Her prognosis was brutal. Little can be done: the disease will first cripple you, then kill you.

The average time from MND diagnosis to death is 14 months. The disease's highest-profile victim is Stephen Hawking, who has lasted 42 years.

Willie and Rein decided to fight. With help from friends they raised $40,000 and set off for a Beijing hospital and Dr Huang Hongyun. They'd read about Dr Huang on the internet, emailed people who had trusted him enough to lie on his operating table, have two holes drilled in their heads and a vial of pink-coloured olfactory ensheathing glial cells (harvested from aborted foetuses) injected into their brains.

Willie was game. Rein would do anything to save her.

It says much about Willie's amazing willpower that four hours after the operation she sat up in bed and drank a glass of fruit juice. That she started talking again a few days later, then just as suddenly couldn't, is harder to explain.

As doctors have said since, it is unlikely that any cells could mend the motor neurones that control swallowing, in five hours. If the therapy did work (which they considered most unlikely) restoration would take time.

But Willie didn't know that. She drank the juice, poked out her tongue, which she hadn't been able to do for months. Her headaches and night cramps disappeared.

Now, eight months later, she and Rein are forced to concede any improvement was short-lived. "She can't speak at all now," says Rein. "And she hardly eats. It's all tube feeding - a little bit of banana, avocado and salmon squashed to a porridge. She still manages that, but only just."

What they have bought is a little time.

They drove a campervan to Byron Bay from Sydney for Willie's 65th birthday in October. "It's beautiful over there, we saw whales every day. She even had a little swim in the sea." They played golf about a month ago. "She was doing all right too."

And, says Rein, "she will have to hang in for at least one year because last Wednesday was our 39th wedding anniversary. She has to make it to 40. The way she's going now she'll make it."

Although she tires easily, Willie is "still on top" of her husband and busily planning for the arrival of their Auckland-based grown children and 6-year-old grandson, Demos. I can hear her banging about when Rein gets it wrong, and then the robotic monotone of her talking computer. "I must've done something wrong," he says.

Rein, who has returned to work as a paper tester at Tokoroa's Kinleith Mill, is rostered to start at 8pm on Christmas Day. As he says, "It's not brilliant but we're hanging in, still hoping somebody in the world will find something soon. There's a person in Helsinki doing trials, working hard on a cure, who's had reasonable results on animals.

"Things happen all the time. I hope it's in time for Willie."