Charlie Gard suffered a rare, progressive mitochondrial disease. Photo / Supplied
One year after the death of their son, Chris Gard and Connie Yates tell Eleanor Steafel about their ongoing fight and their future.
Just over a year ago, Connie Yates stood in a packed courtroom and paid tearful tribute to her son.
After a five-month legal battle that divided the nation, and drew interventions from figures as diverse as Donald Trump and the Pope, a muscle MRI scan had revealed that Charlie Gard - the 11-month-old from west London born with a rare, progressive mitochondrial disease - had deteriorated to such an extent, his little body could go on no longer.
Flanked by her partner Chris, Connie's eyes brimmed as she told the High Court that it was too late for her baby boy; he would be taken off the ventilator in a matter of days.
The treatment they had fought for, and which they believed could have dramatically improved his condition - contrary to the opinion of Great Ormond Street Hospital (GOSH), which took them to court over the matter - would no longer work.
"We will have to live with the 'what ifs', which will haunt us for the rest of our lives," she said. "But we're thinking about what's best for our son. Mummy and Daddy love you so much, Charlie. We are so sorry that we couldn't save you, but we weren't allowed to.
Sweet dreams baby. Sleep tight our beautiful little boy."Friends and family, lawyers on the bench and members of the press wept. It had been a long battle, bravely fought by two young, first-time parents who had wanted desperately to give their son every chance at life.
By then, Charlie had been in hospital since he was eight weeks old. A year ago today (Saturday), just one week before his first birthday, in a hospice to which they had fought to have him moved, his parents made the agonising decision to take him off the ventilator.
"It haunts me that day," says Chris, shaking his head. "I just feel so guilty. We were in the sensory room and this woman said 'it's time to go in now'. I just let this woman go in and take my son's breathing tube out and didn't do anything about it.
When I meet Chris and Connie, 34 and 32, at their home in a west London suburb, they are visibly exhausted. They were up at 5am to make an appearance on Good Morning Britain, talking about Charlie's Law, the piece of legislation they are trying to get passed.
In a room filled with pictures of Charlie, the couple tell me about the son they were so proud of - whose second birthday they should have been celebrating next Saturday, rather than the first anniversary of his death, today."We both changed as people the minute we saw him," says Chris.
"I feel guilty that I wasn't able to protect him. I feel like we failed," says Connie.Charlie was born on Aug 4 2016 with mitochondrial DNA depletion syndrome, a rare genetic condition that causes progressive muscle weakness, for which there is no cure. "I knew something was wrong at eight weeks," says Connie, recalling how he was losing weight and strength. The GP said he was fine. Unsatisfied, Connie took him to hospital for tests, where doctors wanted to keep him in.
"I begged for one last night at home. Chris had had a cold so I'd been staying at my mum's house. We hadn't been here for a few nights."Charlie would be transferred to Great Ormond Street, where he would remain. Despite medical experts telling them his organs would soon fail, his parents did what any would and sought out alternative treatments. Connie discovered an American doctor, Michio Hirano, professor of neuroscience at Columbia University in New York, who was developing a therapy for children with a similar mitochondrial condition.
"At the time there were 18 other patients on the same medication we wanted for Charlie," she says. "The results were phenomenal. There were children on ventilators like Charlie and nine months later they're walking around like nothing had happened."
GOSH initially entertained the idea, but in January 2017 decided not to go ahead with the alternative treatment.Chris and Connie refused to give up, setting the ground for a drawn-out legal battle. In July, Mr Justice Francis finally sided with the hospital's plea to "let Charlie die with dignity".
The couple took their case to the Court of Appeal, the Supreme Court and the European Court of Human Rights. They lost at every turn. Last July, in the High Court, they accused the hospital of causing a delay that meant they were too late to intervene. "It wasn't about keeping him alive at all costs, it was about just giving him three months trial of this medication to see if it worked or not," said Connie.
"When our baby was still looking at us in the eyes and squeezing our fingers, we couldn't give up on him. We had three other hospitals willing to take him."
At the time GOSH said it "deeply regretted profound and heartfelt differences between Charlie's doctors and his parents have had to be played out in court over such a protracted period. It has been a uniquely painful and distressing process for all concerned."
Chris and Connie say they didn't fully grasp until after Charlie's death the impact of their story; £1.3 million was raised by "Charlie's Army" of supporters, to pay for his treatment.
"We were in this bubble and all we cared about was Charlie," says Chris.Tensions ran high, with doctors at GOSH receiving death threats, something Chris and Connie "never condoned" - and which they still regularly receive online themselves.
"We are not attention-seeking people," says Chris.Connie is at pains to stress that every penny raised has gone into the Charlie Gard Foundation, set up after his death. Both now work for the charity full-time, though they don't take a salary.
The charity has been a lifeline for the pair. Few people understand what they have gone through. Hospital policy means they can't contact the nurses who looked after Charlie, with whom they formed a strong bond. "We miss them," says Connie. "They were like rocks to us. They held us up. They cried with us."
Now, they are focused on Charlie's Law, which would ensure independent medical mediators are assigned to cases like theirs (Connie and Chris say they were initially refused one), to stop so many cases reaching court - and provide legal aid to parents if they do."I can't rest until it's sorted because I just don't want it to happen again," says Connie.
"I want Charlie's Law to help all involved in cases like ours in the future, to improve communication and transparency, which we didn't experience."
It's clear that despite all the pain, the couple, who recently became engaged, are as strong as ever. "We held hands on the best day of our lives, the day he was born; we held hands on the worst possible day of our lives, the day he died," says Chris. "[The wedding] won't be the same, because Charlie won't be there. It will be tinged with sadness."
Today, they will hold hands again by his grave. One day, they hope, there will be another baby. "We'd love to give Charlie a little brother or sister," says Chris. "To tell them what a little legend their brother was."
- Telegraph Media Group
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