Emmerdale actors and couple Laura Norton and Mark Jordon are continuing their fight to find the cure for a rare disease after both their children were diagnosed.
Usher Syndrome is an incurable, rare genetic disease that affects both hearing and vision, and sometimes balance. It means that both their children Ronnie and Jessie will eventually become deaf and blind.
The couple are throwing a charity ball to raise awareness for syndrome in Newcastle this weekend.
The event, at the Hilton Hotel Newcastle, will include appearances from their celebrity friends including Steph McGovern, Joe McElderry, Chelsea Halfpenny, House Poet and Charlie Richmond.
Mark said: “We are very lucky that after all these years of working on television, this is our cause, this is our reason.
“We’ve been given these two children, who are wonderful, but they need assistance to organise their future.
“We’ve got a platform that we can raise this awareness and there’s no way we’re not going to use it.
“We’ve got to keep fighting for change.”
Laura and Mark said finding out their children have Usher Syndrome has been a “massive learning curve”.
The couple added that the earlier a child is diagnosed the more of a “head start” they get in trying to prepare for their future.
Laura said: “We had never heard of it until both our children were diagnosed with it a couple of years ago.
“It’s obviously a fight for our children but now we’re involved with the charity it’s not just about our children it’s about all the other children that have it and are going to get diagnosed with it.
“And all the adult and amazing people we’ve met that are already living with the condition.”
Mark said: “We’re preparing now for what will happen down the line when the vision loss [in their children] starts to occur. We are prepped.
“There are parents who are not aware they can get that genetic testing and there are parents who will hit that stumbling block way too late.”
“If you do get diagnosed early you do get a head start. Information knowledge is power and that’s a huge part of why we want to raise awareness”, Laura added.
“It’s about trying to let people know that that testing is available as well.
“I think a lot of people don’t know that it’s there.
“We were very lucky in terms of getting it when he [their son] was 6 months old.
“Because it’s rare actually most of the funding goes to the more common diseases. The children and the adults living with this deserve to have someone fighting their corner.”
Looking forward to the ball at the weekend, the couple said it will be bolstered by the support of North East organisations including organising charity Cure Usher Syndrome.
Mark said: “There was a lot of love in the room when we had the ball last year and bringing it to the hometown of the charity and Laura’s North East mafia of actors and the community here, is going to offer that love at the ball this weekend.”
Laura said: “WATA and West Nautical supported last year when it was in Manchester it just feels a bit full circle to be back in Newcastle where they’re from and where they work and to have them support us again it feels like one big Geordie cuddle really.”
