Parents continue to fight for baby’s life support despite court ruling

It’s a situation that no parent would even want to think about, never mind having to live such a nightmare in reality.

The parents of a 10-month-old baby boy in the UK who was born with a rare genetic disease are fighting to keep him alive as doctors maintain he is in such a dire condition he should be allowed to pass “with dignity.” Little Charlie Gard was born perfectly healthy, or so it seemed at first, but after realising something wasn’t quite right, they brought Charlie to the hospital and as Charlie’s mum Connie put’s it “they haven’t left since.”

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The condition known as mitochondrial depletion syndrome causes brain damage and muscle reduction – one of the reasons little Charlie cannot breathe without the help of a life support machine. The fight to keep Charlie alive started when doctors in Great Ormond Street hospital maintained that he should be taken off life support but mum and dad wanted to bring him to the US in order to try a different kind of therapy. In a High Court ruling that took place 2 months ago, it was decided that Charlie’s life support machine must be turned off, however, parents Connie and Chris haven’t given up on their want to keep their baby alive - bringing their case to the European Court of Human Rights (ECHR) after exhausting all legal options in the UK.

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So far, the ECHR has ordered doctors in the UK to keep Charlie alive until midnight tonight, allowing them just enough time to fully assess the case and grant a decision. According to the Daily Mail, Richard Gordon QC who has led the case for Charlie’s parents said,

“Charlie is being deprived of his liberty at Great Ormond Street Hospital.”

On the other hand, Katie Gollop QC who leads Great Ormond Street’s legal team put forth the argument that parents always try to do what they feel is best but maintained that the primary interest in the case was the baby’s welfare. She went on to say that the doctors taking care of Charlie sought the professional opinion from other doctors and specialists but who all came to the same conclusion as they did previously.

“Fundamentally the parents don’t accept the facts… they don’t accept that nucleoside therapy (available in the US) will be futile.”

She also added that some doctors thought Charlie could feel pain while others believed he could not, lending more doubt to his desperate condition.

@dailymail - Their poignant family picnic on the roof of the world-renowned London hospital was organised as a surprise for them by nurses moved by the devoted parents’ plight.Miss Yates, 31, a carer, said: ‘Charlie was awake the whole time. It was wonderful for him to feel the sun on his face and the wind in his hair.‘We put on some music and Chris and I lay down next to Charlie. For the first time in months we felt like a normal family.’It was a rare break away from the tension of hospital wards and courtrooms for the young family. Speaking for the first time since the Supreme Court decision last week, Miss Yates said she and Mr Gard, 32, a postman, felt they had been ‘terribly let down’ by the British courts.She told the Daily Mail: ‘We feel terribly let down by the UK justice system. We are still shocked that the Supreme Court wouldn’t even hear our appeal.‘The doctor in America says he believes there is no reason why the therapy won’t work for Charlie. Any parent would battle on as we have. We can’t give up knowing there is a treatment available which could save his life.’

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Parents Connie and Chris previously set up a website in order to gain support from members of the public who can lend support through donations (which over 83,000 people already have) and send letters of concern to those in prominent positions in the area.