Emmerdale’s Laura Norton, 39, and Mark Jordon, 58, have been in tears after learning that both their two-year-old son Jesse and baby daughter Ronnie, who is just a few months old, have inherited the same genetic disorder – Usher Syndrome. The consequences are that both children face sight loss issues and will be forced to wear hearing aids for the rest of their lives.
The showbiz couple opted to open up about their struggles in a bid to help other parents experiencing the same issues.
They admitted they’d “agonised” over whether to go public, but have decided to write their children a letter explaining their decision for when they are old enough to read it.
The condition hadn’t been confirmed until the pair were pregnant with their second child, at which point a routine screening revealed that both parents were carrying the risky gene.
They now know that Jesse and Ronnie both have Usher Syndrome, and are likely to experience “night blindness” in their teens.
READ NOW: Andrea McLean bedridden as she admits ‘I’ve been poorly for so long’
The kids will also suffer from peripheral vision loss and tunnel vision as they grow older.
Hearing struggles have already begun, but fortunately Jesse’s hearing aid has improved his sensory abilities so much that mum Laura has marvelled he can hear aeroplanes approaching in the sky before she can.
Laura and Mark have now revealed all about their rollercoaster journey with the condition in an interview with Hello! magazine.
Admitting she’d always had an inkling about Jesse, she added: “‘My intuition told me there was a serious problem and I was in tears at the thought of it.”
He also failed standard hearing tests, leading her to agonise: “To watch our little boy enjoy the world around him yet know so much will be taken from him, was painful.”
However, not to be defeated, Mark has made arrangements to go to Parliament to lobby MPs this week, with the aim of raising awareness about the disorder.
There are three types of Usher Syndrome, with each one defining the level of hearing and sight loss, and when the onset is likely to be.
According to sense.org.uk, type one causes serious hearing loss, and can even manifest as total deafness at birth.
Sufferers also lose night vision by age ten, and have developmental delays, including struggling to sit up or walk on their own in infancy.
Type two causes moderate to severe hearing loss in childhood and loss of night vision by their teens, which can become severe in later life.
Type three is the least severe of all, with sufferers having normal hearing at birth – and not all are affected by balance issues.
There is no cure for the disorder, and no treatment, other than hearing aids – but many can go on to still lead fulfilling lives, especially if it is detected and diagnosed early.
Although Laura admitted it was “heartbreaking” that she could have passed on the condition, she and Mark are filled with love for their two little ones.
They are determined their diagnosis will impact their quality of life as little as possible.
Laura and Mark first met on the set of Emmerdale almost a decade ago, after her character, Kerry Wyatt, met her partner’s character, Daz Spencer.
Although he only joined the ITV soap briefly, the impact that Laura made on him was life-changing, and their friendship soon turned to romance.
Mark has since declared on Instagram that he feels she is “the most beautiful woman in the world”.
Source: Read Full Article