News Corp is a network of leading companies in the worlds of diversified media, news, education, and information services.Actors Sarah Parish and James Murray talk about the loss of their daughter Ella-Jayne — and their mission to save other kids' livesAfter losing Ella-Jayne to a rare genetic condition, they are determined to turn their heartbreak into a chance to help save children’s lives.James Murray and Sarah Parish lost their baby daughter Ella-Jayne eight years ago to a rare genetic conditionThey refused and instead left the country to do manual labour in an orphanage in Cambodia for a month.It was either that or “drink ourselves to death in a pub”, says Murray.They don’t want sympathy now — they want money.They found Ella-Jayne lifeless in her cot at home, Parish tells me in the quiet of their kitchen, in the Hampshire countryside.“Even when she died, there was this terrible grief,” she says, “but also this rush of euphoria, for having known her and having been given a gift.”This year, when Ella-Jayne would have been seven, they have decided to build a children’s hospital.Murray and Parish have set themselves the task of building a paediatric trauma centre for the whole of the south of England. So many times they said, ‘This could be it.’""They’d be like, ‘You’d better stay the night,’” says Murray. At the time, they were in the middle of the most demanding, exciting and stressful assignment of their lives. And currently, she is the British Government’s Technology Strategy Board member. Browse more videos. It was for 24 hours and was amazing,” says Parish.“Then I got a phone call the next day going, ‘We’ve looked at her scan. For further details of our complaints policy and to make a complaint please click According to her nationality, Murray is English and belongs to English descent. Are you an alcoholic?’ I went, ‘No.
I obviously had very, very bad postnatal depression. Sara Murray must have a net worth in six digit number however the actual net worth is unknown. So it’s all about waiting.”RUBINSTEIN-Taybi syndrome (RTS) is caused by a chance change in two genes and affects around one in 125,000 newborns.About a fifth of those will require intensive care, with sufferers at a higher risk of developing heart defects.They can grow up to be short in stature, with mental disability, developmental delay, small heads and broad thumbs and first toes.There is less than a one per cent chance of a second sibling having RTS.Four months after she was born, Ella-Jayne was allowed home. “She was fun.
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