As fans of Emmerdale will know, Sarah Dingle (Sophia Amber Moore) is suffering from a rare genetic disorder called Fanconi Anaemia, and today, the Daily Mirror reports that the storyline is based on real-life sufferer, Louise Dalgleish.
Louise, who is 10 years old, was diagnosed with the potentially life threatening disease aged 6, and has since been battling to stay well.
Her family have consulted with Emmerdale bosses and scriptwriters to ensure that the plotline is true to life, and in the hope that it will raise awareness of the rare disease, for which there is no cure…
The paper adds, “And with fewer than 150 sufferers in the UK, research and detailed information about the condition is patchy.”
Louise’s mum, Jeannie, said, “When you’re told your child has something like this, nothing prepares you.
“Someone said to me, ‘it’s like buying a train ticket for a certain journey, only to find that your destination has changed and you’re heading for somewhere else completely’.
“Everything you think you knew has gone – the futures you imagined are changed forever.
“We live with this belief that whatever is wrong with your child, you can cure it, and as we now know, that isn’t always true.
“Fanconi is progressive and we have to face that. One minute you’re living a ‘normal’ life with a healthy child, the next minute that’s been taken from you.
“Seeing our life played out on screen has been very strange indeed but we’re glad to have this opportunity. We want it to be a story about hope and looking forward.”
And Louise’s father, Bob, added, “We’re hoping it goes from being an unknown condition to something of a household name, that people will want to help fund more research into, so we can help more children like Louise in future.”
Just like Sarah in Emmerdale, Louise’s problems began to become noticeable after she developed bruises. And as Debbie Dingle (Charley Webb) did, Louise’s parents believed their daughter was being bullied.
Jeannie said, “My first concern was that she was being bullied but then I was worried about leukaemia because I knew bruising could be a warning sign.”
When Louise was diagnosed with the rare condition, Jeannie said, “A nurse took Louise off to play then the consultant sat us down and said she wished she could say it was leukaemia because it wasn’t – it was worse, it was Fanconi Anaemia.
“We told Louise that we now knew what it was and they were going to try some different things to make her feel better.
“We’ve always tried to be honest but there are times when you have to be selective.
“Louise has asked me, ‘Am I going to die?’ and I’ve answered by saying we all are some day – what mother could tell a child anything else?
“Our son, Alex, then 12, googled Fanconi for himself, so he understood what it meant and I feel sad that he’s had to grow up like that.
“He had to be screened too because siblings have a 25% chance of having it too. Luckily he didn’t.”
For now, Louise is managing her condition with drug therapy but the family haven’t ruled out a bone marrow transplant in future.
Bob said, “It’s been strange watching it, not just for us but for friends and family who might not realise what we’ve been through.
“But it is inspiring and positive as it’s putting Fanconi Anaemia out there for the first time and that can only be a good thing.”
You can learn more about the illness by visiting www.fanconihope.org