If the worst happens today I don’t know how I’ll cope

As a judge decides Charlie Gard’s fate, his indomitable mother Connie gives her most impassioned interview yet

BABY Charlie Gard was freshly bathed, dressed in a pure white babygro and with his beloved toy monkeys at his side, as his mother, Connie Yates, looked deeply into his eyes. After eight unbearable months, the day she and her partner, Chris Gard, had dreaded had arrived.

Their son’s life support was to be withdrawn, and Charlie, their beautiful, silky-haired, brown-eyed boy, would die.

Over that weekend — the extra time doctors had given them to make ‘precious memories’ with Charlie — friends and family had paid their visits to say goodbye. They’d travelled from far and wide, some coming from Scotland, for one last kiss. Connie had carefully cut his nails, keeping the tiny clippings, taking handprints and footprints of his fingers and toes in different coloured paints.

‘Chris and I lay next to Charlie, and we cried more than we’ve ever cried before,’ she says. ‘Chris was in pieces. I hated it, knowing I couldn’t do anything to help my boys. I kept shaking my head in disbelief at what was happening.’

Their battle — for that is exactly what this couple has been waging over the past few months — was finally coming to an end.

The previous week, on June 27, their application to the European Court of Human Rights in Strasbourg had failed. It effectively closed the last legal avenue of appeal for the couple who are pleading to take their profoundly sick, 11-month-old son to the U.S. for controversial (and futile, say his doctors) treatment.

With a heavy heart, the judge ruled that Charlie’s life support should be switched off, allowing him to ‘die with dignity’.

But then, a few days later, there was an astonishing reprieve. In a development that almost defies imagination, Chris, 32, and Connie, 31, were told by a member of staff at Great Ormond Street Hospital that Charlie wasn’t going to die that day after all.

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hospital had decided to refer the case back to the High Court, persuaded by an 11th-hour letter from Connie, citing evidence from seven scientists arguing that the U.S. treatment might work.

What did they feel? Relief? Vindication? Hope? Or yet another heart-lurching loop in the rollercoaster that has become their version of ‘normal’ life?

Connie goes with ‘hope’. ‘Hope has kept us going all this time,’ she says. ‘Until you find yourself in a situation like this, you have no idea how powerful hope is.’

Today, when the family returns to the High Court for what is expected to be the final time, they will learn Charlie’s fate.

Mr Justice Francis gave them 48 hours to gather new evidence. He needs to be convinced on two key areas: that the treatment — a medicine which is taken orally — would even reach Charlie’s brain; and second, that if it did, it would make any difference, given the doctors’ continued insistence that Charlie is significantly, and irreversibly, brain damaged.

Yesterday the Gards’ spokesman, Alasdair Seton-Marsden created yet more controversy when he appeared on a U. S. TV show and described how Charlie was ‘effectively being held captive by the British state’ in its refusal to allow him to go to America.

Whatever your stance in this torturous case, which has touched hearts the world over, you cannot help but feel for this couple.

One minute an anonymous pair of 30-somethings from West London, facing the agony of losing their much-loved son to a rare genetic condition they’d unwittingly passed to him; the next a

cause celebre, involving the highest courts in the world, the Vatican and the White House.

They’ve even been joined by a controversial pastor, the Rev Patrick Mahoney, who flew in from Washington to pray for them. All of it has been totally overwhelming, says Connie.

She recalls the day she discovered the Pope had joined their fight: ‘I wrote a letter to the Vatican a few days previously. I was having a breath of air outside the hospital. I went back inside and Chris said: “You won’t believe this — the Pope has just tweeted.” ’

He was referring to a comment made by Pope Francis on Twitter — ‘To defend human life, above all when it is wounded by illness, is a duty of love that God entrusts to all’ — which everyone took as a direct reference to Charlie’s case.

‘It was amazing,’ says Connie, who has never followed any religion. ‘It gave us hope Charlie was meant to live — I joked about this being the start of our miracle.’

The next day that hope continued when President Trump also tweeted his support, declaring: ‘If we can help little Charlie Gard, we would be delighted to do so.’

‘We were amazed,’ says Connie. ‘These were the most powerful men in the world and they supported us.’

It doesn’t matter that Mr Justice Francis — in whose hands Charlie’s fate ultimately lies today — has described her and Chris as the most devoted parents, Connie still blames herself that things have gone this far.

‘When we lost another court case, when things haven’t gone right, I’ve always felt I’ve let Charlie down,’ she says. ‘We had literally tried everything to give our son a chance, but we failed. We’d lost our rights as parents.’

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the day she prepared her son for his death, she says: ‘All our family had said their goodbyes. I can’t put into words how horrible it was watching Charlie’s grandparents see him for the last time, Charlie’s auntie and uncle and everyone else ... absolutely heartbreaking.

‘I looked around the intensivecare unit. Charlie was the most stable baby in there, but he was the one who had to die in a matter of hours. I thought: “Why him? What did he do wrong?” ’

‘Everything set off more tears. I looked at the clock, which said 7pm, and I cried because it would be the last time Charlie would be alive at 7pm. We felt as though people thought we were bad parents. Yet we know that our son isn’t suffering. We couldn’t watch him suffer.’

Another thing this tragic case has revealed is the sheer spirit of this tiny blonde woman, with the haunted, tear-stained face, who’s become a symbol of unfaltering, mother’s love.

While she and Chris — who worked as a postman — have presented a united front in their fight for their son, it is Connie who has emerged as the formidable, driving force.

The only daughter of a carer and a firefighter, who herself worked as a carer for adults with learning difficulties before Charlie’s birth, Connie has shown herself to be steely, intelligent and eloquent. ‘The doctors certainly underestimated Connie,’ says one of her friends.

Connie admits that when Charlie was first diagnosed, she spent hours, days and nights researching his condition until she became an ‘expert’ on it.

Incredibly, given Connie’s impressive performances in court and in front of the cameras, her mother, Elizabeth, still maintains that her daughter is naturally very shy.

‘She would never willingly put herself in the limelight,’ she says.

‘ Everything she does, every piece of publicity, is for Charlie. Her only thoughts are for him.’

Connie and Chris met through friends in 2010, and were thrillled when they learned they were to become parents. When Charlie was born, a healthy 8lb 3oz last August, there was nothing to suggest the agony that was to come. ‘When Chris held Charlie for the first time, I looked at them and thought: “My boys.” I was so happy,’ remembers Connie.

After taking Charlie home to their flat in Bedfont, West London, their lives revolved around their newborn, who, initally, hit all his baby milestones. ‘When he was eight weeks, Chris cradled him

and Charlie flashed him the biggest smile ever,’ she remembers. Of course, she and Chris had no idea that they are both carriers of a gene for an incredibly rare condition known as mitochondrial depletion syndrome.

Together, there was a one in four chance of Connie and Chris producing an affected baby. Had either of them had a child with anyone else, they might never even have known that they carried the gene. Charlie’s strain of the disease is so unusual that it’s thought to have affected only 16 people in the world; it cruelly and systematically saps energy from vital organs and muscles.

Unsurprisingly, while Charlie might have appeared fine to others, it was Connie’s innate mother’s instinct which led her to first consult doctors about her son’s health. When she mentioned to a health visitor that Charlie was losing weight and seemed floppier than friends’ babies of the same age, she was reassured that it was probably just a virus.

But Connie took Charlie to hospital to be checked out anyway, and over the next few hours it became clear that Charlie was seriously ill. Soon, his lung muscles were so weak he needed a ventilator to breathe and he was rushed to Great Ormond Street for tests. The diagnosis was a bombshell, and doctors soon told Connie that there was nothing they could do. They believed Charlie should be allowed to ‘die with dignity’.

But Connie and Chris refused to believe that nothing could be done for their little boy.

‘He is such a bonny baby,’ Connie says. ‘While other babies in the ICU died or constantly had one emergency after another, Charlie continued to thrive.’

Her research led her to Art Estopinan, whose son, Arturito, had a similar mitochondrial depletion condition. Arturito was the first patient in the U.S. to receive pioneering treatment known as nucleoside bypass therapy.

Administered orally, it is said to work by giving the sufferer the compounds a healthy person naturally produces — called deoxynucleosides — which supposedly ‘repair’ their DNA.

Since receiving the treatment — while Arturito is still on a ventilator and his own parents describe his bedroom as an ‘intensive care

unit’ — the six-year-old has made a remarkable improvement and has even begun to move his limbs.

Connie stepped up her research. ‘I found a case where the therapy had worked well on a Spanish girl who was able to ride a bike,’ she says.

She even produced photos purporting to show a curly-headed toddler on life support and later, apparently after she had undergone treatment, riding a bike.

Connie and Chris approached doctors at Great Ormond Street to ask whether Charlie could be considered for the treatment.

Their hopes were dashed in January when his team said they believed Charlie’s condition had caused structural brain damage, which could not be repaired by any therapy, meaning the treatment was totally ‘futile’.

Connie and Chris would not accept the ruling. ‘We have never felt Charlie is as bad as doctors make out,’ says Connie. ‘And I defy any parent of a sick child who is told by an eminent doctor there may be a chance of saving that child’s life not to want to take it. We only wish people could trust us as his parents.’

With Great Ormond Street refusing to administer the treatment, the couple decided to go public and took their plight to the media. They launched a crowdfunding campaign and raised an astonishing £1.3 million for Charlie to be transferred privately and receive the therapy in the U.S.

But despite having the funds to pay for the treatment, still the High Court refused to allow Charlie to go. His medical team argued that the baby was suffering and the trip would only prolong that agony.

But Connie and Chris refuse to believe that their son is in pain.

‘We have never understood why, as parents who know our child best, who have spent hours by his bedside, our opinions count for so little,’ she explains.

Her frustration that the courts have constantly blocked their wishes as Charlie’s parents is palpable.

Once they hardly dared speak out against Great Ormond St Hospital for fear of upsetting staff who have, after all, kept their son alive.

But now there is nothing to lose. even if getting treatment means Charlie becomes an American citizen (as suggested by two pro-life U.S. Congressmen), agreeing to a photo opportunity with Nigel Farage (the family’s spokesperson Alasdair Seton-Marsden is a former Ukip candidate) or allowing controversial

‘Why do our opinions count for so little?’

U.S. pastor Rev Patrick Mohoney to speak for them at the recent rally. Whatever it takes, is their attitude.

Poignantly, if the couple lose the court case today, at least they know what is ahead. Having been through it once already, they are all too aware of the agony of saying goodbye.

Yet still the thought of having to turn off Charlie’s life support, is unbearable.

Connie admits: ‘I can’t go there. I still can’t think how I will cope if the worst happens.’

What is certain, however, is that when she sits with Chris at the High Court today, the last thing on her mind will be the millions of supporters around the world, waiting for the judgment.

She will be thinking only of Charlie — and that if the result is not what she wants, her efforts were simply not good enough.