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Dying man travels the world
By WILLIAM MACE - Papakura Courier | Wednesday, 28 May 2008


Duncan Bayly has continued to push himself despite being diagnosed with motor neurone disease last year.


Papakura resident Heather Moore farewelled her 30-year-old son on another overseas journey recently knowing it will probably be his last opportunity to see the world.


After he was told he had motor neurone disease (MND) and had only a matter of years to live, Duncan Bayly quit his job in Amsterdam and embarked on visits to London, Melbourne, India, Japan, Thailand and home to Papakura for four months in between.

When Ms Moore found out his complaints about fading coordination and muscle weakness were linked to MND, she was devastated.

"The first I knew how serious it was was that he phoned home to say that he’d been to the specialist and that he was being put into hospital that day so that they could start running some tests for MND.

"It was awful because I had a slight knowledge of the disease and just thought how insidious it was because your brain was still completely active, you had all your faculties but your body just wasted away. I remember thinking at the time how cruel it was.

"It really had a huge impact on him. He was up in the Netherlands on his own in hospital going through these tests and as a parent that was very difficult."

But Duncan has been a inspiration and his spirit is helping everyone come to terms with the rare disease, she says.

The Motor Neurone Disease Association says the condition occurs in only two out of 100,000 people.

About 20 people are diagnosed each year in the Auckland region. It eventually causes all muscles to cease working and average life expectancy is between two and five years after diagnosis.

After experiencing muscle weakness and a "jerky walk" Mr Bayly consulted a specialist.

When he was diagnosed he went through all the phases of shock, anger, sadness and annoyance but then decided to get on with living.

"I then got my act together and not only did I take the chance to stop deferring and really start living – including trips to India, Japan and Thailand and learning to scuba dive – I also decided we have to do something."

Despite there being no immediate prospect of a cure for the disease, he is now fundraising to help future research.

"Helping the researchers may help me – or it may not. But I still want to help those who are diagnosed in the future.

"Having MND and coming to terms with what it means for my life, I can be philosophical.

"But this is a chance for friends and family to do something constructive and positive and will hopefully work towards a goal of discovering how to slow down or prevent motor neurone disease."

And he proved his legs still have considerable power by pedalling the 210km between Amsterdam and London over three days earlier this month.

He was joined by 30 friends and family in his ambitious bike ride – named Ride for MND – and has coordinated other events raising $93,000 for MND associations throughout the world.

Ms Moore has done her part too, holding an event called Music for MND last weekend at Papakura’s Elizabeth Campbell Hall where the "hat was passed around" and about $1100 raised.

http://www.stuff.co.nz/stuff/sundays...2046a6497.html