Meet Charlie Gard’s army as they take on Britain’s courts and medical experts: ‘This is murder. The doctors are lying’

‘I don’t believe that Charlie is suffering, and if he is suffering, it’s better than being dead’

Adam Lusher
Thursday 13 July 2017 23:01
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Supporters of Charlie Gard and his parents came from across the country to gather outside the High Court
Supporters of Charlie Gard and his parents came from across the country to gather outside the High Court

Inside the Royal Courts of Justice, the barristers outlined what could be the last legal arguments that decide the fate of 11-month-old, critically ill Charlie Gard.

The judge, Mr Justice Francis, listened for any new evidence that might let him change his mind and grant the parents’ wish that Charlie go to the US for experimental treatment rather than have his life support turned off.

On the street outside, meanwhile, you saw some of the accoutrements of a child’s party. Brightly coloured balloons were tied to railings.

One was shaped like a monkey, in solidarity with Charlie’s parents, for whom their son’s favourite stuffed animal toy has become something of a talisman.

Another was in the shape of an aeroplane, emblazoned with the words: “Send Charlie to the USA.”

‘Charlie’s Army’ had arrived, with their banners, their slogans, their sympathy and their certainty.

The doctors were wrong, Charlie’s mum and dad were the experts when it came to their son, and a desperately ill baby boy was being cruelly denied the right to life.

To them, Connie Yates and Chris Gard, Charlie’s parents, were heroes with the guts to take on allcomers – the medical establishment, judges – out of love for their son, out of hope that those experimental treatments might just work.

From near and from as far away as Lancashire they came, with home-made placards and T-shirts, with their "#I am Charlie" slogans.

The hashtags were everywhere, a testament to how so much of this story of a desperately ill baby boy has played out on social media.

Where Mr Justice Francis insisted he would not be swayed by tweets, Charlie’s Army celebrated the social media messages with the chant: "Trump, the Pope, they all have hope."

Charlie’s soldiers ranged from grandfathers to young mums with young children (AFP/Getty)

In Charlie's Army, the soldiers ranged from grandfathers to young mums with young children. This, you were told, was worth infinitely more than the tickets for the now abandoned day out at Chessington World of Adventures.

The voice of Dagmera Melo, 36, from south London, mother of a three-year-old daughter and three-month-old baby son broke with emotion as she explained this wasn’t just about Charlie.

What if it had been their children? What if one day it was?

As if to prove the point, Charlie’s Army had in their ranks their own young cheerleader.

With an impish grin, Kaylon Hoppe, five years old, heart-meltingly cute, took the megaphone.

“We’re Charlie’s army,” he chanted.

And, a little later, with a little prompting from one middle-aged woman in the crowd: “This is medical murder!”

His mum Kellie, 30, looked on proudly. Kaylon felt so strongly about this because he had health issues of his own, heart and lung problems. His primary school teachers understood his reasons for wanting to take a half-day off school.

“The doctors are lying,” said Kellie, a full-time mum. “I don’t believe for one minute that Charlie is suffering, and if he is suffering, it’s better than being dead.”

Gesturing to her son, she added: “He suffers on a day-to-day basis, but he’s still a happy little boy. Charlie should be given a chance. Every kid should get a chance.”

Doctors could not always be trusted, she insisted. At one hospital they had not been entirely straight with her, she confided.

“When Kaylon was nine months old and the doctors were treating him,” said Ms Hoppe, “he actually stopped breathing and effectively died. But I wasn’t told about that until two years later.”

And Charlie’s parents were right to insist that they knew their son better than any doctors.

“You know if your child is suffering or not,” said Ms Hoppe. “Every time I take Kaylon to hospital now, the doctors say ‘You are his mother, you know best’.”

Distrust of the medical and legal profession is a recurring theme for Charlie’s army

Such distrust – deep distrust – of doctors was a constantly recurring theme. On most days, Great Ormond Street Hospital (Gosh) might have a towering reputation, admired in many places around the world.

Not outside London’s High Court on Thursday.

Sylvia, 58, a mother of two from Kent who didn’t want to give her real name, was discussing The Independent's story about Gosh doctors being called “murderers” online.

Good news, she reckoned.

“Well, they are murderers, aren’t they?”

The Gosh doctors had said Charlie had suffered severe, irreversible brain damage to the point where he was deaf, blind and couldn’t move, swallow or breathe unaided. The court had heard evidence it was “likely” Charlie was suffering to some degree due to the systems keeping him alive, and the Gosh doctors had concluded it was kinder to let him die.

But the doctors, explained Sylvia were “misinformed”.

Beside her, a 64-year-old grandfather from west London agreed.

“They are not the world experts,” said Graham, a retired “bog standard executive officer civil servant”.

“The world experts are in the US and Italy. The alternative treatments should be tried.”

For them, and nearly all of Charlie’s Army, there were crucial conclusions to be drawn from two of Charlie’s leaked MRI head spectroscopy scans, the print-outs of which adorned some banners.

Charlie Gard judge says he will change his mind if evidence suggests he should

The October 2016 one had said: “The structural appearances are normal.” The January 2017 MRI had said there were no new findings except “subtly increased signal in the subcortical white matter”.

Which meant, the retired civil servant explained: “There’s no evidence of brain damage. Even Gosh haven’t said there’s brain damage. They have said they think Charlie is brain damaged because he is non-responsive.”

He scoffed at suggestions that the reason Charlie was now said to be receiving morphine was to relieve his pain.

“What pain? They don’t know there is any pain there!”

The ex-civil servant gave a knowing look.

“Could the morphine be to sedate him, so he is non-responsive? ... I don’t want to make accusations against the hospital.”

But Dorit Ronen, 49, a recruitment consultant turned full-time mum, was there to develop the theme.

“Doctors have agendas,” said Ms Rosen, from Islington, north London.

There was plenty of suspicion of the mainstream media outside the court (AFP/Getty)

“It’s not like in the old days where they stuck to the Hippocratic Oath and did everything they could to save the patient.

“I think their agenda here is, this is a hospital with a big reputation to maintain, so they don’t want anyone else to be seen to succeed where they have failed.”

Her homemade cardboard banner showed photos of Charlie, linked up to tubes in his hospital bed, with the words: “I am growing, I can open my eyes.”

“There is no truth about his brain damage,” said Ms Rosen. “I have seen the MRI scans.”

As for Mr Justice Francis, his bias was obvious; he was damned by his own words in one of his own earlier judgements.

Quoting the judgement from memory, Ms Rosen said Mr Justice Francis had called the doctors “the most experienced, most sophisticated doctors that our excellent hospitals have”.

“That’s not a statement of fact,” she said. “It’s his biased opinion in favour of the doctors.

“I think he’s looking to save the doctors’ reputations: to him, a doctor’s reputation is more important than a baby’s life.”

Nor was the anger reserved for self-serving doctors and Establishment judges. There was plenty of suspicion of the mainstream media too.

As we tried to talk to a 17-year-old with a ‘Medical murder’ placard, we were interrupted.

We had been watched by a man in a baseball cap and a woman who had earlier been leading the chanting via a megaphone.

“I’ve been told not to talk to the Press,” explained the 17-year-old apologetically. Many soldiers in Charlie's army had received similar instructions.

The man in the baseball cap told us to put our notebook away.

“I will not stop f***ing fighting,” he explained, less than amicably, “until their [Gosh's] f***ing lies are exposed.

“You are f***ing spinning this to make us look bad. How would you feel if it were your son? I can see in your eyes you don’t give a sh*t.

“Why are you always writing that he is brain dead ... all right, that he has already suffered irreversible brain damage?”

The suggestion that journalists were simply reporting what Gosh’s barrister Katie Gollop QC had said in court cut very little ice.

But so what if the Establishment was against them? Charlie’s Army outside the High Court may have numbered about 30 but they made a noise worthy of a gathering many times that size.

“We will not be silenced,” they chanted.

Vehicle horns tooted. The supporters of Charlie’s army were many, even if not everyone agreed with them.

And so they continued, until the day’s court proceedings were over.

If Charlie needed them again, they would be back.

“If he’s still fighting,” they chanted, echoing the words of Charlie’s mother, “we're still fighting."

This wasn’t over.

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