THE awful memory of watching his mum waste away has been spurring on Steven Smith for over a decade.
And this weekend the multiple marathon runner is in New York as his relentless drive to beat the devastating disease which killed her continued.
He will run the New York Marathon tomorrow.
Genifer Smith suffered from Motor Neurone Disease, which debilitates sufferers, leaving them with wasting muscles, struggling to swallow, breathe or talk.
Since her death, Mr Smith, 48, of City Road, Radnage, has been striving to raise £100,000 for the Motor Neurone Disease Association.
Mr Smith set up the Genifer Smith Trust Fund and has raised £85,000 so far.
“My mum died from Motor Neurone disease 14 years ago and I have been on a mission ever since,” he said.
“It's a horrendous disease, you watch people disintegrate in front of you.
"They lose the ability to speak and you are basically a corpse with your mind all still there.
“It's a particularly devastating illness, you know what's coming, but there's no hope or treatment.”
Life expectancy after the first onset of symptoms is just two-five years.
Recently, the disease has featured more prominently in the news, with a number of high profile cases of sufferers seeking to end their own life.
Many of those who have travelled to the Dignitas clinic in Switzerland, which helps terminally ill patients end their lives, have been Motor Neurone sufferers.
This was featured in the recent BBC documentary by ex-BFP reporter Sir Terry Pratchett.
Mr Smith pledged to keep going until reaching the £100k target.
Mr Smith, owner of Professional I.T in Wendover, is dedicating the New York attempt to his dad, who died in July from cancer.
This year he has taken part in the French cycle event Etape Du Tour and the London Marathon – one of many he has completed despite his hatred of running.
For more details and how to donate visit see link below.
FIREFIGHTER Dave James is also heading for the Big Apple to compete in the New York Marathon.
The Marlow fire station crew manager, who has served for ten years, will raise cash the national Fire Fighters Charity which helps serving and retired fire and rescue service staff and their families.
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