EMMERDALE’S real-life couple Laura Norton and Mark Jordan are making a documentary about their children's very rare genetic disorder.
The couple – who played Kerry Wyatt and Daz Spencer on the soap – previously revealed that their kids both have Usher syndrome.
Laura, 40, and Mark, 58, are parents to Jesse, two, and Ronnie, who is nearly one.
Usher syndrome affects both hearing and vision in young children, requiring them to wear hearing aids throughout their lives, and face possibly losing their sight.
The actors initially kept the diagnosis underwraps but are now putting their all into raising awareness and hopefully helping to find a cure for it.
They are currently documenting their journey – and have welcomed cameras into their lives.
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An insider said: “Laura and Mark are really passionate about getting the word out and helping others who have 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.”
Over the weekend, the stars threw a huge charity ball to help raise money and awareness for Usher syndrome.
They were joined by a whole host of celebrity pals including Amy Walsh, Samantha Giles and Tina O’Brien.
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Speaking to Hello! magazine previously about the condition, the couple said they knew by "intuition" that something wasn't right with the little ones.
"My intuition told me there was a serious problem and I was in tears at the thought of it," she said, ahead of the couple taking Ronnie and Jesse for testing.
It revealed that both Laura and Mark carried the gene which causes the condition, which would eventually cause their children to lose their sight.
Laura continued: "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."
Usher Syndrome comes in three types, depending on the severity of the disease and how soon hearing and sight is lost.
There is currently no cure for Usher Syndrome.
What is Usher syndrome?
Usher syndrome affects both hearing and vision in young children, requiring them to wear hearing aids throughout their lives, and face possibly losing their sight.
The genetic disease is present from birth and Usher Syndrome comes in three types, depending on the severity of the disease and how soon hearing and sight is lost.
Symptoms:
Hearing loss
Vision loss
Balance problems
Speech difficulties
Is there a cure?
There is currently no cure for Usher syndrome.
Treatment focuses on helping the patient lead a normal life. This could include the use of hearing aid.
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