Emmerdale couple to film documentary about rare disorder affecting their kids
Emmerdale couple Laura Norton and Mark Jordan are set to film documentary about a rare health condition affecting their kids
Laura Norton, 40, and Mark Jordan, 58, who play Kerry Wyatt and Daz Spencer on the ITV soap, first started dating in 2015, and share two children – Jesse, two and Ronnie, who is nearly one. Earlier this year, they revealed their children have been diagnosed with Usher syndrome, a rare genetic disorder that affects hearing and vision in young children.
After going public with their health journey, the couple have now reportedly landed a new documentary, which will help them shed light on the rare disease.
Usher syndrome can cause balance and speech problems, as well as vision loss, and means those diagnosed with the condition will need to use hearing aids throughout their lives. It’s present at birth, and while there is no cure, treatment involves helping those diagnosed live a normal life with hearing aids and corrective glasses.
Laura has spoken openly about the rare condition her children were diagnosed withAn insider told The Sun that Laura and Mark are “really passionate” about raising awareness of the condition, and hope that welcoming cameras into their private lives will help other children in the same situation. “It was a real shock for them when they found out but they really have taken everything in their stride and are doing some amazing work,” they added.
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The couple even helped to throw a huge star-studded charity ball recently to raise money for the CUREUsher foundation, with soap stars Amy Walsh, Samantha Giles and Tina O’Brien attending to support the important cause. Opening up about the heartbreaking diagnosis, Laura said they decided to go public in an attempt to help other children and to reassure their children they weren’t alone on their health journey.
“We're going to write them a letter to explain why we did this… although it was devastating when Ronnie was diagnosed with the same condition as her brother, it was comforting that neither of them will go through this on their own; that they've got each other,” Laura told Hello!
During extensive testing, the couple were told they both carried the gene that caused the condition, and they were left devastated. “Knowing that we'd passed this on to our son was heartbreaking. To watch our little boy enjoy the world around him yet know so much will be taken from him, was painful,” she explained. Looking back, she said she had an “intuition” something was wrong ahead of the routine newborn hearing tests and feared the worst when Jesse failed the tests.
The couple have worked hard to raise awareness of the genetic conditionThere are three distinct types of Usher syndrome, I, II, and III, which all include hearing loss and balance problems, but it can vary at what age people are diagnosed as symptoms can appear later.
Most people are born with type I, with severe hearing loss and deteriorating vision throughout the first few years of their life. Children diagnosed with type I may fail to hit developmental milestones, such as walking and sitting independently.
Type II is less severe, and while those born with it have hearing loss as children, their vision does not start to worsen until they are teenagers, or even adults. While type III occurs later in life, and, most babies born with this type will have their hearing and vision slowly deteriorate until middle age. Around four to 17 people in every 100,000 are affected by the disease, with type I and II the most common.
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