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The decision over Charlie Gard comes down to a matter of belief

The judge needs “dramatic new evidence” to reverse his decision. No one can provide that. 

There is an awful lot that everyone involved in the heart-rending case of Charlie Gard agrees on. No one disputes that the 11-month-old boy, currently a patient in the intensive care unit at Great Ormond Street Hospital (GOSH), has an extremely rare genetic condition – mitochondrial DNA depletion syndrome (MDDS) – that causes death in early childhood.

The variant that Charlie inherited affects many organs, principally the brain and muscles, depleting those tissues of the energy needed for them to function. He remains alive because of artificial ventilation; he can't move, he is deaf, he suffers from epilepsy, and his vision is not developing normally. Everyone accepts that there is no cure. And all agree that there is no currently recognised treatment to ameliorate the effects of the disease.

The case is commanding enormous public attention because of the crucial disagreements between Charlie's parents and the medical experts in his case. These boil down to three areas: the degree of permanent brain damage already sustained; what Charlie's quality of life is like (particularly whether he is experiencing pain); and whether an experimental treatment – nucleoside therapy – might improve his condition, however imperfectly and temporarily. As Charlie's parents raised more than £1m through a crowdfunding campaign in order to take him to America for nucleoside therapy, GOSH went to the courts.

In April, Mr Justice Francis, sitting in the Family Division of the High Court, agreed with the hospital that this would not be in Charlie's best interests, and ordered instead that Charlie's life support be withdrawn in favour of palliative care and a "dignified" death. Over the intervening months, Charlie's parents have appealed that decision all the way to the European Court, meeting at every stage with the same judgement.

What is really going on here? It is not, at its heart, a dilemma about administering modestly life-prolonging treatment to a child with a poor quality of life and an abysmal prognosis. That goes on up and down this country every single day: kids with incurable cancer being given toxic treatments in the hope of buying them just a little more time with their loved ones, perhaps to manage that holiday of a lifetime to Disney; severely disabled youngsters with catastrophic chromosomal abnormalities being prescribed antibiotics to cure yet another chest infection that might otherwise be the one that will eventually see them succumb.

The issue in the Charlie Gard case is the experimental and uncertain nature of nucleoside therapy. This has not previously been administered to a patient with Charlie's specific condition, but there are indications from laboratory research – and the use of the therapy in related disorders – that it might just do him some partial and temporary good. Indeed, GOSH itself apparently applied for ethical approval to try the unproven therapy earlier in his illness, but abandoned the idea because of the marked deterioration in his condition during the time it was being deliberated.

I'm quite sure of this: were there to have been previous experience with nucleoside therapy that demonstrated a modest difference to patients like Charlie, then he would be receiving it even now. But because there isn't, arguments about the degree of reversibility of brain damage that he's already sustained, and disputes about his quality of life (his parents insist he experiences far more interaction and enjoyment than GOSH recognises, and they are certain that he is not living in pain) are being marshalled to support the don't-go-there decision.

This is why the case is back at the High Court this week. Since the final failed appeal to the European Court, seven experts around the world have made known their belief that nucleoside therapy has a small but real chance of providing some palliation to Charlie. GOSH, under pressure from Charlie's parents' legal team, have gone back to Mr Justice Francis to get his ruling on these developments. At a preliminary hearing on Monday, the judge gave Charlie's parents, Chris Gard and Connie Yates from south-west London, 48 hours to present any fresh information as to the potential for nucleoside therapy to make some difference. The hearing resumes on Thursday. The judge has said that he will require “dramatic new evidence” to reverse his previous decision.

No one is going to be able to give Mr Justice Francis that – there cannot be convincing evidence as to the role (or otherwise) for nucleoside therapy until it is tried on patients just like Charlie, who number a mere handful worldwide. The decision is still going to come down to extrapolated facts, and the attitudes and beliefs on the part of doctors and researchers. But Mr Justice Francis would do well to recognise what medicine already does for thousands of children and parents every year: gives them evanescent comfort amidst otherwise unremitting despair.

Photo: André Spicer
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“It’s scary to do it again”: the five-year-old fined £150 for running a lemonade stand

Enforcement officers penalised a child selling home-made lemonade in the street. Her father tells the full story. 

It was a lively Saturday afternoon in east London’s Mile End. Groups of people streamed through residential streets on their way to a music festival in the local park; booming bass could be heard from the surrounding houses.

One five-year-old girl who lived in the area had an idea. She had been to her school’s summer fête recently and looked longingly at the stalls. She loved the idea of setting up her own stall, and today was a good day for it.

“She eventually came round to the idea of selling lemonade,” her father André Spicer tells me. So he and his daughter went to their local shop to buy some lemons. They mixed a few jugs of lemonade, the girl made a fetching A4 sign with some lemons drawn on it – 50p for a small cup, £1 for a large – and they carried a table from home to the end of their road. 

“People suddenly started coming up and buying stuff, pretty quickly, and they were very happy,” Spicer recalls. “People looked overjoyed at this cute little girl on the side of the road – community feel and all that sort of stuff.”

But the heart-warming scene was soon interrupted. After about half an hour of what Spicer describes as “brisk” trade – his daughter’s recipe secret was some mint and a little bit of cucumber, for a “bit of a British touch” – four enforcement officers came striding up to the stand.

Three were in uniform, and one was in plain clothes. One uniformed officer turned the camera on his vest on, and began reciting a legal script at the weeping five-year-old.

“You’re trading without a licence, pursuant to x, y, z act and blah dah dah dah, really going through a script,” Spicer tells me, saying they showed no compassion for his daughter. “This is my job, I’m doing it and that’s it, basically.”

The girl burst into tears the moment they arrived.

“Officials have some degree of intimidation. I’m a grown adult, so I wasn’t super intimidated, but I was a bit shocked,” says Spicer. “But my daughter was intimidated. She started crying straight away.”

As they continued to recite their legalese, her father picked her up to try to comfort her – but that didn’t stop the officers giving her stall a £150 fine and handing them a penalty notice. “TRADING WITHOUT LICENCE,” it screamed.

Picture: André Spicer

“She was crying and repeating, ‘I’ve done a bad thing’,” says Spicer. “As we walked home, I had to try and convince her that it wasn’t her, it wasn’t her fault. It wasn’t her who had done something bad.”

She cried all the way home, and it wasn’t until she watched her favourite film, Brave, that she calmed down. It was then that Spicer suggested next time they would “do it all correctly”, get a permit, and set up another stand.

“No, I don’t want to, it’s a bit scary to do it again,” she replied. Her father hopes that “she’ll be able to get over it”, and that her enterprising spirit will return.

The Council has since apologised and cancelled the fine, and called on its officials to “show common sense and to use their powers sensibly”.

But Spicer felt “there’s a bigger principle here”, and wrote a piece for the Telegraph arguing that children in modern Britain are too restricted.

He would “absolutely” encourage his daughter to set up another stall, and “I’d encourage other people to go and do it as well. It’s a great way to spend a bit of time with the kids in the holidays, and they might learn something.”

A fitting reminder of the great life lesson: when life gives you a fixed penalty notice, make lemonade.

Anoosh Chakelian is senior writer at the New Statesman.