Motor neurone sufferer chasing a miracle

First went the hands, then the legs - and then all hope.

Looking back, trying to pinpoint the moment five years ago when he first knew something was wrong, 39-year-old Mike Skinner pauses deep in thought and recalls the ashen face of his neurologist as he broke the news.

"'Mike, I'm sorry to have to tell you but you have motor neurone disease. You probably have eight years at best'."

For a fleeting time, a month or two at most, Mike and his family continued with their lives as if nothing was wrong, the notion of death too difficult to contemplate.

Mike would get up every morning and go about his normal routines - work and tending to his boys.

And then the disease took hold. While normally the progression of motor neurone disease is slow, steady and silent, in Mike's case it hit with lightning speed, destroying his nerve cells, taking away his livelihood, his favourite pastimes - and eventually his marriage.

While his mind remained sharp, his hands lost the ability to grip, his legs could no longer support his frame, and his speech became more and more unrecognisable. He was helpless against the progressive paralysis that eventually froze nearly every part of his body.

A motorcycle fanatic, Mike eventually had to sell his prized high-performance BMW as he no longer had the strength to ride it. Cloaking himself in deep feelings of anger and frustration, Mike was ready for death, ready to say his goodbyes.

And then a beacon of hope. The case of 64-year-old Willie Terpstra, the first New Zealander to undergo foetal cell therapy in China, reignited Mike's faith.

Suddenly his thoughts turned from when he was going to die to how he was going to live.

Now, survival in the face of long odds is a recurring theme in the Skinner household.

Foetal cell therapy - implanting tissue from aborted human foetuses into the brain, where they replicate to create genetically identical cells - while ethically controversial and still illegal here, is changing the face of modern medicine.

The treatment is still largely un-proven, but it does offer fresh hope for patients like Mike. He is now on a priority waiting list for foetal cell therapy in China - and has been told he could have the treatment within the next six months. He will be the second New Zealander to undergo the treatment.

Mrs Terpstra, of Rotorua, had the revolutionary surgery in a Beijing hospital in March. Within hours of the surgery she was drinking, and, within days, talking, eating and breathing better. However, there has been limited progress since.

"We know the risks are huge, but I have to do everything within my power for my boy. We just can't simply sit back and let Mike die," said Mike's mother Barbara Skinner, who along with a group of supporters is spearheading a fundraising drive to get the $50,000 required for the treatment in China.

"Even if it prolongs his life ... the prospect of this treatment has changed Mike. There's light back in his eyes. After all these years, he now has a new sense of hope."

Mike said he was sick and tired of being a burden on his friends and family. The disease, he said, had been the cruellest of afflictions, robbing him of his self-esteem and his manhood.

"I hate being dependent. It is degrading. The emotional toll on everyone has been huge."

Just five years ago, he said, he had been a hard-working devoted father leading an active life.

With his wife, he had bought his first home and together they were preparing to build a life together.

Now she was gone and his days were spent confined to a wheelchair.

"He is rotting away, basically. It's time do something," Mrs Skinner said. She has promised her son that if they cannot raise the $50,000 required for the operation and travelling costs, she will mortgage her home to get everyone to Beijing.

Mike is realistic about the chances of the success of the operation. He says the notion of repairing disease-ravaged cells with replacement cells is still highly arguable, but he has to remain optimistic.

And if the operation was a success? "I'd love to go back to work - and I'd love to ride motorcycles again. Wouldn't that be great?"

TO HELP

If you wish to contribute to the fund to help send Mike Skinner to China for foetal cell therapy, donations can be posted to PO Box 114, Pukekohe or made at any ASB Bank to: Mike Skinner China fund.

- HERALD ON SUNDAY