Tony Hopper: "The support has been humbling. It really makes me proud to be Cumbrian"

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In all the goodwill that has flowed towards Tony and Sue Hopper since news of his motor neurone disease diagnosis has spread, even the small gestures have left a mark.

The girl in their son's school who is cutting off her hair for charity and giving them half the proceeds. The drive from Derby undertaken by Rory Delap, a few days after Hopper's condition was confided, so he could spend an hour with his best pal. The anonymous donations on their online fundraising page.

It has been, they admit, a "surreal" few days in which an appeal, set up to help them take their three boys to Disneyland and make other lifelong memories, has raised more than double its £10,000 target.

With many of the pledges have come written tributes to Hopper, a popular former footballer with Carlisle United and Workington Reds. "I've found it quite difficult to read," Tony says. "You almost think you're reading about someone else. But it's really humbling."

Sue describes the nervous moments after they set up their gofundme page on Monday night and so made Tony's condition public. An email notifying the first donation arrived within two minutes. By the morning there were scores of messages; now hundreds. "It's overwhelming, unbelievable," Sue says. "It's lovely to know Tony's so well thought-of."

These moments have given the couple some strength at an immensely difficult time. It is only a month since Tony's illness - bulbar-onset motor neurone disease, with an average prognosis of two to three years from the onset of symptoms - was formally diagnosed, and after posing for photos with their three lively boys (Jack, four, Adam, seven and Daniel, nine) they sit together as a team, Tony and Sue.

It is clearly not easy for them to speak about what they are going through, but they do so with courage, to ensure that Tony's story is told accurately and that his family's gratitude is expressed to hundreds of people they could never individually thank.

It began, Tony explains, last May, with a slight slurring of his speech. "At that point it was all after having a pint or two. Sometimes it was fine." Yet the slurring worsened by the autumn, while Tony also found a weakness in the grip of one of his hands. "There was a lot of head scratching. You wonder what the hell's going on. What it turned out to be wasn't even considered."

He visited the doctor in November and was referred to a neurologist. Tests began in December and the condition was confirmed last month. "There was a lot of urgency because of my age [40], a lot of questions," Tony says.

The upsetting news was then shared among their closest family and friends, who responded, they say, with limitless love and support. Tony has had to give up his job with furniture company DFS and, while his symptoms are not greatly noticeable yet, he is trying his best to cope with the emotional challenges.

"In a day, I have lots of dips," he says. "Sue is almost at the end of her nursing degree and it's really important for us, and me, that she completes the course. With that, there's a lot of time where I'll be alone, which doesn't suit me. So all my days are being filled with friends calling round, taking me for a bite to eat, going for a walk."

Tony was known as a determined footballer but how he finds a mindset to cope with a debilitating illness is a question he cannot yet answer. "At the moment, I can still do the majority of the stuff I've always done. I'd be lying if I said it's not in the back of my head. But I do try and take one day at a time.

"I might surprise myself. At the moment it takes quite a long time to get motivated on a morning. You get yourself up to a level, then you go back to bed, then you have to do it all again. It's hard work. But I've got good people around me. That's what will get us along."

Their focus, too, is their sons, and the Hoppers, who have been married 12 years, received advice from the Eden Valley Hospice before sitting them down to explain something of their dad's condition. They have been able to tell Daniel - the oldest, and the spit of a young Tony - a little more than the others, and he has been reading all the messages on the gofundme page. "With Adam and Jack," Sue adds, "we've said Daddy's got a sore hand, and because he's got a weak arm he can't go to work any more. Then his arm's going to get worse, then his other arm will. They understand that. So there's no worry."

They are stunned that the volume of donations has already made their Disneyland dream achievable; they plan to go for two weeks in the summer, and are thinking of other, "spontaneous" family experiences. A trip to Chester Zoo is next on the agenda while they also plan to involve their boys in fun activities which will help raise money for the Motor Neurone Disease Association.

"What has been a positive is the fact the kids are now excited," Sue says. "We're saying to them, you can do anything, what do you want to do? That's every kid's dream, isn't it? All those people who have donated have made that possible."

Jack, Adam and Daniel, meanwhile, will be mascots at Carlisle United's game against Portsmouth next weekend, when they will lead the Blues out with 'Hopper' and their respective ages on their shirts. Tony will be guest of honour and freely admits some tearful moments are likely when he walks out of the tunnel and greets the crowd.

The family, though, appreciate how United have reached out to them, and while they have been invited to sit in the directors' box, they say they would prefer to sit in the family stand, surrounded by many of their nearest and dearest.

Football in general has touched the Hoppers. As Tony talks fondly of his United days, when he was part of a memorable crop of talented young Cumbrian players, he cannot get over the number of old friends who have contacted him. "There have been players who maybe just played for Carlisle a short while and moved away. Workington was also a big part of my career, and the support and love I've been getting from out west hasn't gone unnoticed either. I've even been getting best wishes off guys I played with in the junior league as a 10-year-old.

"Maybe it's a cliche," he says, "but it does make me proud to be a Cumbrian."

Practical considerations are also being made. A specialist nurse from Newcastle's Royal Victoria Infirmary is visiting next week and Sue says that, in time, they will need to adapt their house to suit Tony's changing condition. The support of the hospital, hospice and the MND Association has been invaluable. Through her nursing background Sue also has a good knowledge of the illness, while Tony's initial acquaintance with it related to the ice-bucket challenge craze of 2014, and Professor Stephen Hawking, before learning more as the weeks have passed.

Nothing, though, has moved them more than the kindness of people. Delap, a lifelong friend, was recently able to treat Daniel, a Manchester City fan, to a tour of the club's training ground and also Derby's stadium, where he is under-18 coach. He also bought tickets for the Hoppers to go to Alton Towers with more of their friends.

"People are wanting to do things with us," Sue adds. "It makes it all the more special if we can share things with them. And, going forward, we need this community too, not just our closest friends. All those people, all that support...it really adds up."

Their parents, they say, have been towers of strength. "They might have their moments on their own, but when they're with me they're so, so supportive," Tony says. "My dad's been following all the messages. I think it gives him and my mam strength a bit."

Sue smiles. "How amazingly proud would you be of your son if you saw that all those people loved him?"

Love runs deeply through all parts of this story, and Tony has one more person to thank. "It's going to be hard for me to say this," he says, taking a pause. "But I dread to think where I'd be if it wasn't for Sue. I couldn't do it without her."

It is the only time in the interview that his emotions fully catch up with him. Sue, listening quietly, reaches for his hand.

* To support the Hopper family, visit https://www.gofundme.com/creating-hoppy-memories

* To donate to Tony's fightback fund in support of the Motor Neurone Disease Association, visit https://www.justgiving.com/fundraising/Tony-Hopper

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