Making most of each precious day as it comes
SANDRA ****
(sdick@edinburghnews.com)



LITTLE Finlay MacDonald proudly shows off his red and black scooter, while little brother Alec messily tucks into his afternoon snack.

Mention "Santa" and a slightly confused look crosses the three-year-old's face, although it's guaranteed that within a few weeks he'll know exactly who he is.

Euan, their dad, smiles lovingly at the two little boys: this Christmas will be very special for him too. For the 32-year-old is acutely aware that each passing year is more precious than the last.

Euan is four years into fighting motor neurone disease, a cruel condition that usually claims half its victims' lives within the first 24 months. Every single day - let alone Christmas - is a bonus.

MND has affected Euan's balance as it gnaws away at his body. His hands shake a little and his grip is distressingly weak. Even crossing his legs takes a huge amount of effort.

His speech has now deteriorated to what at times is a near-indecipherable slur.

Given all this, you might think Euan would be facing Christmas with a heavy heart. But he's not.

"I think we're going to have a great Christmas this year," he says, breaking into a grin as he glances over to his own father, Donald.

"The family will be together and it'll be the first one that Finlay is really aware of. I really do think it'll be good."

Yet the family can't escape the dreadful fact that Euan is a dramatically different man today than he was four years ago.

Back then he was a high-flying investment banker in London with a six figure salary, in love with his American girlfriend, Liz. He worked hard and played harder. If he wasn't powering down the rugby pitch, he was skiing, running or playing football.

Back in 2003, he noticed a sudden, inexplicable loss of power in his left thumb. It persisted, and he scoured the internet for answers while waiting for the results of tests to come back. What he read on his flickering computer screen was not encouraging.

"I knew it was neurological and when I went online to find out what, it became pretty clear fairly quickly what it probably was," he recalls.

Despite his upbeat attitude, it's clear to see the devastating impact of motor neurone disease as it ravages the young dad's body yet leaves his mind as bright as ever.

For his father, Donald, sitting next to him, it's heartbreaking.

Joint chairman of Caledonian Brewery and co-founder of the City Inn hotel chain, Donald approached contacts at Edinburgh University - father and son both studied there - and hunted down experts from abroad before pledging £1m of his own cash towards establishing the Euan MacDonald Centre of Motor Neurone Disease Research.

Six months have passed since news emerged of the family's generosity, and already there are signs that the new centre is forging ahead in examining all elements of a distressing and incurable condition that hits upwards of 100 Scots every year.

Based next to the Royal Infirmary at Little France, it runs alongside the university's Scottish Centre for Regenerative Medicine, where stem-cell researchers are already working towards therapies for MND, cancer, Parkinson's and other conditions.

Although finding a "cure" may be years away, Donald explains: "Our hope is that if you collect enough bright people together in a centre like this in Edinburgh, they will play off each other a bit.

"If people are working together, then there must be a chance of something coming out of it. You've just got to hope."

Euan refuses to dwell on negatives. Instead he has drawn inspiration from the likes of Professor Stephen Hawking - an MND sufferer who has lived with the disease for more than 40 years - and former Scottish rowing champion Owen McGhee, who has survived many years after his diagnosis.

As well as staying active for as long as he could, Euan tried various alternative therapies - "they promised a lot, but there hasn't been much evidence of them having any serious benefit," he says - and travelled the world.

He visited America and South Africa, and saw the British Lions tour in New Zealand. He travelled to France to watch rugby World Cup matches, and joined the Tartan Army at the Parc de Princes to revel in a famous Scottish win.

But perhaps his biggest achievement was his marriage to Liz and the arrival of their sons, Finlay and his little brother Alec, just 18 months old.

"I've actually had a great time in the past four years," nods Euan. "Having this diagnosis at least helps you enjoy what you actually have and to work out what your priorities really are.

"I've also had my sons which has been really amazing and great fun."

In the next room, Finlay and Alec play together, unaware of the incurable condition which, barring a miracle, will one day rob them of their father.

"The one good thing to come out of this," says Euan softly, "is that if I didn't have it, then I'd be working all hours and I'd rarely see them. I have been able to spend lots of time with them, and it's made me appreciate every single day."

For more information on the condition, contact the Scottish Motor Neurone Disease Association on 0141 945 1077 or go to www.scotmnd.org.uk

Slow decline as muscles waste away
MOTOR neurone disease (MND) is a progressive and ultimately fatal condition that causes the muscles to waste away. It most commonly affects people aged from 50 to 70 years, mostly men.

Famous MND sufferers include Scotland and Celtic legend Jimmy Johnstone, the late actor David Niven and English rugby league star Mike Gregory who died last month.

The condition covers a range of diseases affecting the motor neurones - nerve cells along which the brain sends instructions in the form of electrical impulses - and spinal cord. The dilapidation of these vital cells causes weakness and wasting away of the muscles, ultimately fatal.

The disease takes, on average, three or four years to run its course, although it varies from patient to patient. Scientist Stephen Hawking has lived with MND for more than 40 years.
http://living.scotsman.com/index.cfm?id=1910502007