“Our kids are the starting block, we know we can’t ever stop. How could you ever turn your back on people who need help?”

Emmerdale star couple Laura Norton and Mark Jordon are getting ready to host their big fundraising ball in Manchester at the weekend – determined as they are to find a cure for a rare genetic syndrome.

They have been organising their huge “Cure Usher Ball” entirely themselves for the past three years, and the reason they are so driven is close to home.

For Laura and Mark’s young children, Jesse, four, and Ronnie, two, were both born with the rare Usher Syndrome that causes hearing and sight loss over time.

The couple are now passionate supporters of the Cure Usher Syndrome charity, and the positive news is that scientists are edging ever closer to finding a cure.

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It gives Laura and Mark the fire in their bellies to put together their big fundraising extravaganza to raise as much money as they can for medical research.

Their belief is that a cure could be as little as ten years away – and it signals hope for their children. But moreover the couple believe they can help an entire community diagnosed with the condition to have hope.

Laura says: “The ball is a distraction because it feels like we are doing somethig for our children and the community of people with Usher Syndrome. But the reality is, it’s a ticking time bomb for these little kids and at some point they’re going to lose their visison, their reality hits you again.”

Mark adds: “Our kids are part of this huge community and we can make a change for the whole community. It’s so achievable if we can just keep making a noise.

“Our kids are the starting block, we know we can’t ever stop now. How could you ever turn your back on people who need help?”

Incredibly, they pull the disco-themed event all together themselves, calling in favours from their family and friends, alongside their hectic work and parenting commitments.

Laura and Mark met while both starred on Emmerdale, Mark at the time playing Daz Spencer, while Laura remains on the soap as Kerry Wyatt.

The ball on Saturday night, at the Manchester Deansgate Hotel, will feature star performances from Alexandra Burke and Chelsea Halfpenny, while a host of famous faces from soapland will be in attendance.

Talking of how the ball first came about, Mark laughs: “Me and my big mouth at a board meeing for the charity!

“I was really fed up that everyone who ran a marathon, baked cakes, washed cars, all that money people raise, was being used to pay someone to host a ball, I was like ah I don’t get it, all this money should go to the charity, so we said, “we’ll do it we’ve got connections”, so four months later we did our first ball.

“You can imagine our black book of friends was used, you really know who your pals are let me tell you but everyone showed up for us! My hair is a different colour now, because we really did sit on our competer day in day out to get it all together.”

Laura added: “Our skill set has really gone up, god we’re in events now! We’re not just actors. Our negotiating skills are so much better now.”

They raised just shy of £60,000 in their first year which “blew their minds” – with the money going directly to fund vital research into Usher Syndrome and the batttle to find a cure.

Despite the stress of organising that first event, they jumped straight back in the following year. They admit it has now “become a brand” because it means the charity know they have a lump sum coming in.

Mark said: “This year I feel like we’ve gone up a notch, we’ve had people approaching us, there’s a lot of interest, a lots of celebs around it, it’s just gone up a notch.”

He added: “You learn by your mistakes, last year was excruciatingly difficult, we were really really upset, we raised £54,000 which was still a healthy amount, but it was like pulling teeth, it was so hard to get to that point and we were so drained and exhausted but we thought actually if we change this that and this it might work better. This year we feel so confident going into it, almost like it’s the first year again.”

Laura said: “The cause, you can put money into something and potentially know it’s hopeless, years away, but this, they’re very close, there’s a particular person in this country, she’s the leading professor in the country dealing with vision loss for this syndrome, if she gets the funding there will be something in the next decade because it’s a rare condition the funding isn’t there. This community deserve to have people cheering them on.”

The couple have praised their friends from Emmerdale and Coronation Street who have helped with the ball.

Laura said: “We haven’t had to ask for anything, that first year Kelvin [Fletcher] said we’ll donate some prizes, all our friends have been donating us prizes, they know, a lot of them have children, there have been a lot of people reaching out on instagram, it gave us hope and comfort.”

It’s hard for the couple not to get emotional when they hear the stories of other families, and Mark has been filming some of those for videos to be played out at the ball.

Mark said: “You see people absolutely destroyed because they’re perfect kids. We’re not telling our kids because we want them to live in as happy a way as possible, we don’t want to say ‘one day you will lose your eyesight’, or ‘you might not be able to ride that bike, you may not dirve’.

“You hold that anxiety, and when we interview people, new people every year, they’re experiencing this horror of having their children’s future change in a dramatic way.

“It’s hard for us, because you are instantly right back to your first memories of diagnosis and you can end up in this dark cloud for days, but you have to snap out of it and get on with it.

“But all these people we have spoken to are helping us, they give us new insights.”

In the lead up to the ball, they are getting all the Studio 54 theming ready, with lots of disco vibes and of course sequinned ensembles for Saturday night at the Manchester Deansgate Hotel extravaganza.

Mark laughed: “I’ve had about 17 parcels arriving with outfits to try on, that’s just for me! There will be lots of sequins.”

They have got two headline sponsors on board, the Mum&Me baby brand and hearing aid company Starkey. They have had the support of further sponsors this year including JD Foundation, We Are Communications, Birmingham Optical and Advanced Electrical Solutions.

They are keen for anyone else who feels they can help support the charity, and future balls, to get in touch, and just hope everyone who heads along on Saturday night will have a great time.

Laura said: “People like to be part of finding the cure, they feel they’re doing something to help.

“We are already thinking about next year and anyone who wants to help us we would love to hear from them.”