IT is a rare and little understood debilitating condition which is slowly taking away his ability to speak and move freely and has already cost him his role as a front line firefighter.

 

And now ataxia sufferer Martin Barker has launched a campaign to raise awareness about the struggle he and others with the illness face each day and to gather funds to help the search for a cure.

Ataxia is a neurological condition that affects balance, co-ordination and speech which is carried by around 10,000 people in the UK.

The term covers a wide range of symptoms and each sufferer is affected in different ways, with the course of the disease also changing from person to person.

Mr Barker learned he had ataxia in 2002 and now wants to combat prejudice and general ignorance about the disease, which has lead to people thinking he was drunk or mentally impaired.

The 48-year-old said: "It was once described to me as 'being drunk without the happiness', and this is very apt.

"People have mistaken me for being drunk because it causes me to slur my words and struggle to get them out.

"I use a stick to advertise and carry a card with me to show to people explaining the symptoms, but there's a lot of prejudice out there and you do get funny looks from people."

He added: "But I don't blame anyone for their opinions as I put it down to a lack of understanding."

Some forms of ataxia are treatable, but for most forms there is still no cure. In Mr Baker's case it first manifested itself as a hesitancy when he was speaking and stiffness when he moved.

It is a genetic condition, and the father-of-two was diagnosed after his sister was confirmed with the disease.

He said that no-one in his family knew what was affecting him until she was revealed to be an ataxia sufferer.

He said: "She came back from the doctor and told me about it, and I thought 'that sounds like exactly what I have'.

"It's progressive and has been getting steadily worse. I had to give up being an operational firefighter, which I loved, and now I'm stuck behind a desk."

Both Mr Barker's sons, Michael, 21, and Ewan, 17, will have to be tested for the condition, something he says he is preparing himself for.

He said: "It's a huge worry and I've been told that they have a 50/50 chance of having it, but I'm hoping that it won't affect them and that a cure will be found."

Mr Barker says he wants to make a contribution to fighting the condition and is raising funds with a sponsored skydive this August.

He is calling on the public to back him and has set up the charity page bakerchallenge2015 on the justgiving website for those who would like to make a donation.

He said: "As an operational firefighter is has been my duty, and my pleasure and privilege, to have been there to assist people in their time of greatest need.

"Now I find myself in circumstances on need and vulnerability and am asking for assistance for myself and all other sufferers in my condition."