Court battle to stop hospital turning off our baby's life support

Charlie is in a stable condition and not believed to be in any pain. Photo / GoFundMe
Charlie is in a stable condition and not believed to be in any pain. Photo / GoFundMe

The British parents of a desperately ill baby will today beg the High Court to keep him alive - as doctors say it would be better to let him die.

Seven-month-old Charlie Gard suffers from a genetic condition so rare he is believed to be only the 16th person diagnosed with it in the world, the Daily Mail reported.

His heartbroken mother and father are now in a race against time to raise money for Charlie, their only child, to receive pioneering treatment in the US.

And they were devastated when his doctors in Britain said his life support should be withdrawn so he could die with 'dignity'.

Now the court will decide Charlie's fate, with an initial hearing taking place in London today.

Last night his mother Connie Yates, 31, said: 'We love our child with every ounce of our being and we want what's best for him.

'It's as if Charlie is being sentenced to death.' Charlie has a form of mitochondrial disease, a debilitating condition which saps energy from the body's organs and muscles.

Great Ormond Street Hospital in London, where Charlie is in intensive care, is asking the High Court to sanction withdrawing his life support.

A hospital spokesman told the Mail: 'Charlie has a very rare and complex disease, for which there is no accepted cure.

'We have tried to strengthen Charlie and give him the best possible chance of survival. But his condition has continued to deteriorate and we now feel we have exhausted all available proven treatment options.

'We appreciate how hugely distressing this is for his family and we continue to support them in every way we can, while advocating, what we believe, is best for Charlie.'

Charlie was born on August 4 last year, weighing a healthy 8lb 3oz.

But instead of developing normally he got weaker, and aged eight weeks he was admitted to hospital.

Miss Yates, a carer for young adults with learning difficulties, and her partner Chris Gard, 32, a postman, have kept a bedside vigil.


Mitochondrial disease affects the body's cells and can cause heart, liver, kidney, breathing, sight and hearing problems.

Charlie is in a stable condition and not believed to be in any pain, his parents say, with the disease manifesting itself as weakness in his muscles.

He is being kept alive with a ventilator to aid his breathing and a nasal tube for food and water.

Mitochondria are often described as the tiny 'power stations' of our bodies, supplying the energy cells needs to function.

If cells do not have enough energy, then the body's organs and tissue do not work properly.

Approximately one in 200 babies born in the UK have slight genetic 'mistakes' that can cause mitochondrial disease, although severity varies and symptoms may not be noticed at all.

Charlie has a particularly rare type known as mitochondrial depletion syndrome.

There is no known cure, but Charlie's parents have found a US doctor trialling a pioneering treatment.

They are trying to raise money to take their son abroad - a huge cost, as he would need a private plane with paediatric intensive care facilities and staff.

Miss Yates said: 'Charlie literally has nothing to lose but potentially a healthier, happier life to gain.

'So we were shocked and horrified to find we are being taken to court and them asking for Charlie's life support to be switched off.'

'Every little flicker of his eyes tell us we're doing the right thing'

There is a routine Connie Yates and her partner Chris Gard have got into over the last five months. Every morning, shortly before 10am, Chris leaves his 'home', which these days is a small room reserved for parents of gravely sick children at Great Ormond Street Hospital, to visit his seven-month-old baby, Charlie.

Staff there are familiar with his frequently weary, but steadfastly positive presence arriving on the ward, as the doctors are finishing their rounds.

He then makes his way to the intensive care unit, where little Charlie awaits. For the next 14 hours, he will sit by his son's side, stroking his hand, reading him stories and chatting to him - telling him it won't be long until he's back home, going for walks in his pushchair, to the park to feed the ducks.

At 11am, Charlie's mother joins him. The couple will share a hug and a few catch-up messages, before they take turns to lie on the bed and cuddle Charlie. They leave only briefly, usually one at a time, to get a sandwich or coffee.

At midnight, Chris goes back to their room - their flat in Bedfont, south-west London has not been slept in for months - to get some sleep. Miss Yates will stay until 4am, occasionally stroking her baby's downy head as he sleeps, and soothing him as he wakes.

After kissing Charlie's cheek, she whispers: 'Keep fighting and we'll keep fighting for you'. And she will head off into the dark, and climb into bed next to Chris, before another day begins.

This is the routine that has given them hope over the last five months, as they await the treatment that potentially could save their much-adored boy.

Charlie has mitochondrial disease, a degenerative genetic condition which stops the body's cells producing enough energy to function. 'We need to be there, we need to spend every waking hour with him,' says Miss Yates.

'We know we may not have much time left. In those precious moments in that hospital room we are a family together, a team. If we change his nappy, he moves his arms. Occasionally, he manages to open his eyes. It is such a struggle because this wretched disease affects every part of the body - it even makes his eyelids weak.

'But if we lock eyes we can see him trying to open them wider. And we feel that our presence calms Charlie. It's not much, but every little flicker convinces us that we, his Mummy and Daddy, are doing the right thing to not give up on him.'

But that is exactly what they fear medics at Great Ormond Street are doing. They claim it is 'not in the best interests' of Charlie to continue his life-sustaining treatment. Last week the hospital applied to the High Court for the little boy's artificial ventilation to be withdrawn - ending his life. 'We were shocked and horrified to find we are being taken to court and that the hospital are asking for Charlie's life support to be switched off,' Miss Yates told the Daily Mail.
Charlie is in a stable condition and not believed to be in any pain, with the disease manifesting itself as weakness in his muscles, his parents say
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Charlie is in a stable condition and not believed to be in any pain, with the disease manifesting itself as weakness in his muscles, his parents say

'I can't put into words how horrible it is to see court papers with our baby's name on them. It's as if Charlie is being sentenced to death.

'Our parental rights are being stripped - yet we are not bad parents. We love our son and want the very best for him.'

Charlie was born a healthy 8lb 3oz in August last year, after a problem-free pregnancy. Aged just six weeks he began smiling, and his proud first-time parents were overjoyed.

'Charlie was such a bonny baby,' remembers Miss Yates, 31, a carer. 'I breastfed him from birth and he was reaching all his baby milestones, gurgling and smiling.

'But by eight weeks old I started to get worried. He was losing weight, and, as other babies seemed to grow more robust, he seemed to lose strength.

'I took him to our local hospital but he rapidly declined. He choked on his milk and after developing aspiration pneumonia in October, he was transferred to Great Ormond Street.'

Tests revealed Charlie had mitochondrial depletion syndrome - so rare he is believed to be only the 16th sufferer in the world. Tragically, it seemed to be inherited from his parents who did not know they carried the rare gene.

Doctors said there was little they could do for the condition, which leaves muscles so weak even the lungs cannot function without a ventilator. 'I'll never forget the day a doctor sat both of us down and said gently there was nothing they could do,' Miss Yates said. 'The best thing we could do was to let our son slip away.'

However, the couple refused to believe nothing could be done.

Miss Yates said: 'I spent countless days and nights on the internet researching the condition, speaking with doctors and scientists and eventually found a new treatment called nucleoside bypass therapy being trialled in the US.

'By giving Charlie the compounds a healthy person naturally produces - called deoxynucleosides - Charlie's DNA could potentially be repaired.

'The NHS couldn't pay because the scientific proof needed isn't yet published. But I spoke with a neurologist in the US and two others doctors, who are confident it will work, and we set up an online page to raise the £1.2million needed.'

Mr Gard claims he and his partner spoke with UK consultants who initially appeared supportive, and indicated they were prepared to wait while the couple found the money.

But they were dealt another blow - when last month a partial 'do not resuscitate' order was put on Charlie.

Miss Yates said: 'We were with Charlie when one day a lawyer turned up. After ushering us into a side room he dealt some devastating news. While ventilation would be continued, the doctors felt it was not in Charlie's best interests to give him any other treatment.
Charlie (pictured with father Chris) has an ultra-rare form of mitochondrial disease, a debilitating condition which saps energy from the body's organs and muscles
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Charlie (pictured with father Chris) has an ultra-rare form of mitochondrial disease, a debilitating condition which saps energy from the body's organs and muscles

'So if he had a heart attack and died his heart would not be restarted. We were shocked but the way it was presented to us we had no choice.' Optimistic Charlie could be saved, the couple launched their fundraising page. Miss Yates recalled: 'Within hours money flooded in and our campaign was trending on social media with celebrities donating money.

'Every day we woke to messages from people we've never even met who identified with our nightmare. They kept us going.'

As their fund has grown - it last night stood at around £50,000 - Charlie has grown too. Miss Yates said: 'When he went on life support in October he was terribly underweight but being tube fed he gained weight, and grew from this tiny, scrap of a thing to a gorgeous, beautiful, seven-month-old with dimples.'

The couple were stunned to read in court documents that UK doctors believe it is 'in Charles's best interests not to undergo nucleoside therapy' - with concerns over 'maintaining Charles's dignity'. 'When I read them I felt sick,' said Miss Yates. 'It was as if suddenly all our hope had been taken away. It seemed so cruel and pointless.'

She continued: 'We can't just let our baby die when there is hope and treatment available that might help him.

'If Charlie receives this treatment and it does work it won't just be his life that's saved, it will be many more children in future who are born with this horrible disease. If he dies at least we will have done everything we possibly can. Like any loving parents, we will do whatever it takes to save our baby's life.'

•To donate to Charlie's appeal, click here. www.gofundme.com/please-help-to-save-charlies-life

- Daily Mail

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