Stem cell transplant woman's last hope

Rein and Willy Terpstra hope a transplant of two million stem cells into Willy's brain will give her the ability to speak again and ward off at least some of the ravages of motor neurone disease. Picture / Alan Gibson

More than anything else, motor neurone sufferer Willy Terpstra would love the opportunity to speak again - even for just one day.

And it is with that goal in mind that the 64-year-old Rotorua woman will board a plane tomorrow and travel to China for a controversial stem-cell transplant.

The process - through which around two million healthy cells from an aborted fetus will be transplanted into Mrs Terpstra's brain - is banned in New Zealand and most other parts of the world.

It is deemed unproven and highly controversial, especially because of the source of the cells, and no other New Zealander is believed to have undergone the process.

However, to Mrs Terpstra, who looks fine but has less than a year to live, the risky process offers a much-wanted chance for her to speak again for the first time in six months.

The mother of three was diagnosed a year ago with motor neurone disease, a terminal condition in which nerves supplying the muscles degenerate.

In six short months she lost her ability to talk. While her husband, Rein, can understand her, the noise that comes out of her mouth sounds more like a low, painful groan.

Mrs Terpstra gets by with a machine she types into which then relays an electronic voice message, but these days the disease has progressed to the stage where swallowing and eating have become difficult.

The next stage in the debilitating condition will affect her ability to breathe properly. Eventually she will be bedridden. Mr Terpstra said it was through their son in their homeland of Holland that the couple learned last year of Dr Hongyun Huang and the 400 stem-cell transplants he has conducted in Beijing.

With the success rate high, they contacted the American-trained doctor and were told Mrs Terpstra could have the surgery in August.

But following a rapid worsening in her condition, the surgery has been moved forward. The Terpstras, with two of their children, will instead leave for China tomorrow with the $40,000 operation booked between March 12 and 15.

Mr Terpstra said his wife was expected to regain her ability to talk and swallow within two days of the surgery. While it was not known if her life expectancy would increase, he said it would be a huge improvement just to hear her voice again.

"Even if she can talk and eat normally for a moment it is still a bonus because that's her biggest wish, to talk to people in the streets and the shops."

Mr Terpstra recalls how when he first told his workmates that his wife was losing her voice they laughed, called him lucky and asked where they could get a similar fix for their wives. "At the time it was quite funny, but not now," Mr Terpstra said quietly.

While there are risks with stem-cell transplants, the Terpstras say there are no alternatives.

"We don't have an option," said Mr Terpstra. "We either do nothing and she dies or we try."

The surgery

* Willy Terpstra will arrive at Chaoyang Hospital in Beijing tomorrow night. Tests will be done early next week.

* Sometime between March 12 and 15, Mrs Terpstra will be put under a local anaesthetic.

* Two holes will be drilled through her skull and around two million stem cells will be transplanted into her brain.

* The surgery will take about 2 1/2 hours. About a day and a half to two days later, doctors expect Mrs Terpstra to regain some of her ability to talk and swallow.