Emmerdale’s Laura Norton and Mark Jordon share children’s heartbreaking health battle

The stark realisation of the challenges that lie ahead sometimes winds Laura Norton and Mark Jordon like a punch to the gut… and that’s because it concerns the stars’ children, Jesse, three, and two-year-old Ronnie.

“All of a sudden, you take a big intake of breath because you realise nobody’s found a cure yet,” says Mark, 59, who played Daz Spencer in the ITV soap. “If you let it, your day could be ruined because you feel the pressure of the reality that nobody’s stopping this yet.”

“And they don’t know,” nods his fiancée Laura, 41, who portrays Kerry Wyatt. “They’re living their little lives and they have no idea what’s coming. That’s really hard sometimes.”

The couple are talking about the heartbreaking discovery that their young son and daughter will eventually become blind and deaf because of a rare genetic condition known as Usher syndrome.

Presently incurable, it is present from birth and can range in severity, with symptoms typically emerging during adolescence.

Both children were diagnosed with hearing loss at birth, now classed as moderate to severe, and wear hearing aids. But Usher syndrome also causes retinitis pigmentosa or RP, a disease of the retina cells leading to night blindness, tunnel vision and, eventually, a total loss of vision.

“We can expect their sight loss to start within their adolescence, so that is our yardstick for what we need to achieve before then,” says Mark, who also played PC Phil Bellamy in the long-running period drama Heartbeat. “It’s given us the drive to go, ‘We’ve got a decade, let’s get on with it.’”

To that end, the couple have dedicated the next decade of their lives to helping find a cure for Usher syndrome. As patrons of the charity Cure Usher, they have placed their faith in genetic eye diseases expert Mariya Moosajee, Professor of Molecular Ophthalmology at UCL and the Francis Crick Institute in London.

Approximately 400,000 people worldwide have Usher syndrome and funding is scarce.

So Mark and Laura are raising £300,000 over three years to enable Prof Moosajee and her team to find a cure. So far, they have raised more than £100,000 through two charity balls.

Their tireless efforts to raise awareness about Usher syndrome led them to be nominated for national disability charity Sense’s 2024 Campaigner of the Year award.

International Day of Persons with Disabilities took place earlier this week and the Daily Express is supporting the Represent The 24% campaign, reflecting the fact that disabled people make up nearly a quarter of the UK population.

Upbeat and brimming with positivity, the couple have been told a cure for Usher’s syndrome should come in their children’s lifetime. But they also have hope they can save their children’s sight before it fades.

“We have to have that hope,” says Mark. “I’m preparing myself for what happens next, but 100% yes we do hope – because otherwise we couldn’t get up and do it.

“Raising awareness and fundraising takes us away from the children to a degree, from the meeting I had today with a possible funder, to the balls, and going to Parliament.”

Laura interjects: “It’s beyond a full-time job.”

Mark nods: “If we didn’t believe a cure was possible, we wouldn’t miss a total second with our kids. It carries us through the disruption of our normal parenting.”

The doting parents agonised whether to go public before their children were old enough to understand the conditions themselves. But as Laura says, if they had done nothing, “we’d kick ourselves in 10 years’ time”.

Mark adds: “It’s hard to know you’re lying to your kids even if it’s for the right reason, but we want them to have adventures and a visual memory board of the places and people they’ve seen. If we for one second make them feel that this is scary, they might not enjoy that moment.”

The hardest part of their situation, they explain, is trying to remain calm, knowing the difficulties that may lie ahead for their children.

“It’s really hard because things do catch you off guard,” says Laura. “They will describe something they see or how beautiful something looks.”

Jesse and Ronnie are fun-loving and boisterous in person, laughing and charging around their home in Yorkshire when the Daily Express photographer arrives.

“Jesse is very bright, he’s intuitive and sensitive…. and has a wild streak,” smiles Laura. “He loves his superheroes. He’s got a wicked sense of humour and loves mimicking people.”

He’s also extremely loving, as his mum, who is originally from Newcastle, explains.

“I lay with him in bed at 6am the other day and he just looked at me and said, ‘We love each other, don’t we mammy?’ I said, ‘Yes, we do!’ He’s constantly telling us he loves us. He’ll give our dog Juno a cuddle and tell her, ‘Don’t worry, we’ll be back in a minute.’”

Ronnie, she adds, is “feisty and fun with the best sense of humour”.

“She’s terrifying,” laughs Laura. “If Jesse has something she wants, she’ll stare him down for 10 seconds and then go and headbutt him!”

Both children are “smashing all their milestones”. It was only when Jesse failed his newborn hearing test shortly after birth that Laura and Mark knew something was wrong.

Nurses thought it could be fluid in the ears initially, but Jesse’s hearing loss was diagnosed at three months. Doctors then carried out a genetic test, with the results confirming Jesse had Usher syndrome when he was 18 months old, when Laura was pregnant with Ronnie.

Laura burst into tears upon hearing the “heartbreaking” news. She and Mark went home and straight onto Google, against doctors’ advice. “There was lots of jargon, it was scary stuff. You see the word blind and you think, ‘Oh my god.’”

Everything about this new world, from sign language to hearing aids, was unnerving.

“We went straight towards the negative,” admits Mark. “What if he’s bullied at school? What if he doesn’t speak properly? How can we fix this?”

Doctors said the odds of Ronnie developing Usher syndrome were one in four. Confirmation of her positive diagnosis arrived when she was two months old after her genetic test was fast-tracked.

Understanding how their children are affected by noise levels in different environments is now a constant learning curve for Laura and Mark, who meticulously clean their children’s hearing aids.

Simple things like a visit to a coffee shop can be challenging because of the hiss and whirr of the coffee machine, plus the hum of people talking. For that reason, Laura and Mark never have the TV or radio on at home as background noise.

Recently, they discovered their children were becoming agitated on car journeys because the height of their child seat headrests was creating a “bounce back” of sound.

“There was no particular advice about that, we found out by accident,” says Mark. “We were putting it down to tiring, long journeys to and from audiology checks.

“You’ve also got the engine rumble, our conversations and traffic, which all become irritating to the children who can’t have a relaxed, quiet journey.”

Jesse knows to communicate if something is too loud or is hurting him. Laura and Mark are guided by a Teacher of the Deaf, a qualified specialist who helps deaf children with everything from caring for their hearing aids and developing their language and communication skills, to preparing them for adulthood. Typically funded by councils, their number has come under threat more and more in recent years due to budget cuts.

“We’re calling on the Government to set up a £34million MSI teacher fund to help make sure more deafblind children have the opportunity to thrive at school and beyond,” says Rebecca Liddiard, head of children and young people’s services at Sense.

Arming children with as much language as possible is the key to helping communicate their wants and needs in future. And this can result in some adorable moments.

“I was with the children in the car yesterday when Jesse said, ‘I’m taking my ears out mammy because I just want to listen to some music in my head,’” says Laura. “Everything was just a bit too much. We can never understand just how difficult that is for them.”

Mark and Laura are doing their best to enjoy the present with their adorable children as much as they can while thinking ahead.

“We’re loath to start thinking too hard about what we will have to do in the future – ‘What kind of furniture will we have to move? What extra help will they need?’ – until it gets closer to the time because we’ve got about a decade until we need to think about it actively,” says Laura. “You make the decision not to preempt it too much because if it’s in our psyche, it becomes in their psyche and at the moment, we just want to enjoy them and have them be fearless.”

It’s an approach that has clearly rubbed off on their fun-loving toddlers.

“Honest to god, Jesse’s hearing aids are the smallest thing now in hindsight. He takes them out and tells us when he doesn’t want them,” says Mark. “He names them. At the moment, they’re a superhero villain colour in red and black.”

Both children have 20:20 vision right now and attend regular ophthalmology appointments. Whatever happens, this relentlessly upbeat couple are optimistic about the future.

“Mark describes it sometimes like a ticking clock, every second counts,” says Laura. “You do hope everything’s going to be OK, but we’ve met so many people with the condition who are absolutely smashing life.

“They’re not people who are debilitated. They live life, have careers and families, and do the same things as everybody else.

“We want other parents in the same position not to worry. There is lots of help and support out there. Our children love life and have lots of friends. They are amazing.”

For more information about Usher syndrome, visit cureushersyndrome.com or sense.org.uk

Meet the doctor racing to find a cure

Professor Mariya Moosajee is a consultant ophthalmologist specialising in genetic eye disease at Moorfields Eye Hospital. As a Professor of Molecular Ophthalmology at UCL and The Francis Crick Institute, she leads a pioneering research team that is developing a gene therapy for Usher syndrome.

Prof Moosajee says: “The genes that cause Usher syndrome are large so they cannot be packaged into conventional viruses that deliver genes to the retina, the light sensing layer at the back of the eye.

“I have developed a specialised circular piece of DNA that holds the entire USH2A gene (the commonest gene associated with Usher syndrome) without any viral components. This has been applied to Usher patient cells and zebrafish, a valuable animal research model for early biomedical tests, and shows great promise with the production of healthy protein and the restoration of function.

“The team are now trying to find a safe and effective vehicle, called a nanoparticle, that can help deliver the gene therapy into the human eye.

“To complete this step, we are about to embark on a high volume screening method to test thousands of nanoparticles. Once we have a handful of candidates, we will test the retinal transfection in a live rabbit with Usher syndrome, which has been genetically engineered by researchers at the University of Michigan in the US.

“If this is successful, we will be ready to move to clinical trials in patients. We anticipate this could be in the next five years but it is entirely dependent on whether enough research funding is available.”

For more information about Usher syndrome, visit or