emmerdaleLaura Norton and Mark Jordon of ‘s have opened up about their sons Ronnie and Jesse’s diagnosis of Usher syndrome.
A rare genetic condition with no cure, Usher syndrome affects hearing and night vision, with severe vision loss later in life. People with Usher syndrome type 1 also have balance problems.
“We’ve been agonizing over doing this even before we’ve told our kids about their condition,” said Mark, who played Daz Spencer. Hello!.
“But we would never forgive ourselves for doing nothing when we could make changes that would help them and other kids.”
This content is imported from Instagram. You may be able to find the same content in another format, or you can find more information on their website.
Related: emmerdaleLaura Norton reflects on real-life romance with former co-star Mark Jordon
The couple first became concerned about the health of their son Jesse when he failed standard hearing tests as a baby.
“My gut feeling told me there was a serious problem and I was in tears thinking about it,” revealed Laura, who plays Kerry Wyatt on the soap opera Yorkshire Dales.
However, they did not discover that it was Usher syndrome until they were expecting their daughter Ronnie, who was informed during a medical evaluation that they both carried the gene that causes the disease.
Related: emmerdale co-stars Laura Norton and Mark Jordon welcome a baby girl
“Knowing that we had passed this on to our son was heartbreaking,” said Laura, who was later told that her children would develop night blindness in their teens, before the loss of peripheral vision and tunnel vision.
“Watching our little one enjoy the world around him and knowing that so much will be taken away from him, it was painful.”
“Although it was devastating when Ronnie was diagnosed with the same condition as his brother, it was comforting to know that neither of them will go through this alone, that they have each other,” Mark reflected.
“As they get older, Jesse will be the best influence and support for her.”
Such is his passion for raising awareness, Mark is set to enter Parliament later this week to campaign for funding.
emmerdale airs weekdays at 7:30pm on ITV1 and airs on ITVX.
Read more emmerdale spoilers on our dedicated homepage