'Community support has made life with MND easier'

A dad-of three with motor neurone disease (MND) said the "mind-blowing" support of the community had made life much easier for him and his young family.

Ryan Horsfall, 40, of Stowmarket, Suffolk, first experienced problems with his arm in October and by the end of the year was told he had the incurable condition, which causes muscles to weaken.

He has talked openly about his diagnosis to raise awareness and support, with hundreds of people turning up for a 24-hour football match at the weekend.

"When you first get diagnosed, your head goes to 'this is it, doom and gloom', but really, it's not, it's more like the start of a journey," he said.

"With everything that's been going on and what everyone has been doing for us, it's just become so much easier for us.

"All these people here - you're not alone, we're not alone, and I think that's the one thing that helps when you get it all out into the open."

His wife, Kimi, said speaking out about the illness and the dramatic change to their lives had been difficult, but has also created a "big community".

Hundreds of spectators and some 150 players turned out for match at Needham Market FC, near Ipswich, which Ryan described as "absolutely incredible".

When the BBC spoke to Ryan in January, he was finding it difficult to carry out tasks as a self-employed plumber due to the problems with his left arm and hand.

He has since ceased work - a moment he had been dreading.

"As the weeks went on, I just couldn't do it - and I decided then it would be the best time to stop," he said.

"It hasn't been as bad as I thought, I accepted it and I know what the journey is - it's just something you have to do.

"I can't pull my fingers together anymore and my thumb won't go up and it just feels, it's all a bit tucked in.

"But you've got to accept it because you know this is how it's going to be.

"If you don't, I think you're in trouble."

He and Kimi found the benefits system tricky and time-consuming, but they have being able to put food on the table - and enjoy life as much as possible - because of the community support.

"The [benefits] process was not as easy as you would think it would be, especially when people have such a progressive and fatal illness," said Kimi.

Online fundraising and community events, however, had taken some stress away from them and the children, who were now growing up with MND in their lives.

"As awful as it is, they won't know any different," she added.

"It's not fair - none of this is fair.

"But we are enjoying just living and the kids have loved it because we've been on so many holidays; there's this kind of loveliness to a real sad thing."

Kimi said she hoped the show of support in Needham Market would also raise awareness of the disease and drive donations to MND charities.

"We really want to push that - we need to find a cure and we need to help other families that aren't in the position that we're in," she added.

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