Sarah Parish's 'unbearable' loss of daughter born with rare genetic disorder that 'changed us as people'
Broadchurch actress Sarah Parish's life off-screen was 'changed' forever by the heartbreaking loss of her eight-month-old daughter. In 2009, she and her husband, fellow actor James Murray, tragically lost their daughter Ella-Jayne due to a rare congenital heart defect.
Ella-Jayne was born with Rubinstein–Taybi syndrome, an extremely rare genetic condition, occurring in around one case per 125,000 live births according to the RTS Support Group. The condition is often but not always characterised by typical facial features, microcephaly (small head circumference), broad thumbs and first toes, intellectual disability, and postnatal growth delay. It can also cause eye abnormalities, heart and kidney defects, dental problems, and obesity.
Sarah, who is tracing her family history in ITV show DNA Jounrey tonight, previously opened up about the devastating loss, saying: "It changed us as people, definitely. It has to. And actually, the older you get, the more people you meet who have lost children.
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"A lot of people lose children in far worse circumstances than Jim and me. Ella-Jayne was only eight months old, she was very poorly anyway, so we were already prepped for what could happen.
"Whereas I've met people along the way who had a healthy child, everything was good, and suddenly they've gone. I've known people who have lost their children at the age of 16.
"It's just unbearable. It will always change you as a person. It's changed us for the better, I think."
She added: "I think my life has turned out very differently to how I thought it would. I mean, I have a great life, but if you'd asked me 20 years ago I'd have said, 'I'll have five kids', because I loved kids; unfortunately, it turned out that I was a bit rubbish at having them. But you live with what you've got."
But she said the experience had made her a better person. After travelling to Cambodia and working in an orphanage for two months following the tragic loss, Sarah and her husband set up the Murray Parish Trust, a charity committed to improving paediatric emergency medicine across the south of England.
The website for the charity, which has raised millions since being set up in 2014, says: "The Murray Parish Trust exists because children experiencing serious illness are three times more likely to struggle with their mental health. Childhoods are overshadowed by coming to terms with diagnosis, hospital visits, treatment and feeling different. By improving access to specialist, imaginative and empowering support for children and their families across the UK, at the earliest possible moment, these children can go on to lead happy and fulfilling lives."