A FATHER from Monk Bretton had never heard of motor neurone disease - until he was diagnosed with the terminal illness just over a year ago.
It has prompted sufferer Ian Pratt, 43, whose body is wasting away from the disease, to back a new charter calling for an end to ignorance about the disease.
Motor neurone disease leaves sufferers unable to move, walk, talk and eventually, breathe - destroying the cells that control movement.
Treatments are very limited and most patients are only expected to live between two to five years after diagnosis. Around half will die within 14 months.
Despite becoming progressively more ill, Ian, of Newhill Road, is throwing his support behind the Motor Neurone Disease Association's charter to raise awareness of the disease, which so far has been signed by about 12,000 people.
"I'd never even heard of it, so coming to terms with the disease is doubly hard as I have to explain what is, what it's going to do you and the speed at which it can take hold," said Ian, a former businessman and father to Georgiana, three.
"I can still move at the moment, but my body is wasting away. I've lost more than five stone since being diagnosed and it's starting to affect my confidence now.
"I can't go out anywhere in public without assistance."
As well as the physical and emotional strain on the family, the disease has also brought financial worries with Ian having to give up work and wind up his business.
Ian, who hails from Australia and moved to Barnsley in 2003, says the plan now is to live each day as it comes.
"We've got things that we want to do and we've been to Disneyland with Georgiana while I was still able to walk and wander around.
"Every day is just a matter of hoping today is going to be better than yesterday but the problem is the disease is unrelenting and constant.
"There won't be a cure in my lifetime, so this charter will make more and more people aware of the disease and what it can do to you. This can only be a good thing."
