When he was just eight weeks old, Charlie Gard was taken to hospital after losing weight. His parents, Chris Gard, a postman, and Connie Yates, from Bedfont, west London, would later say: “None of us have been anywhere near home since.”
On Monday, nine months after their “beautiful boy” was admitted to Great Ormond Street hospital diagnosed with rare encephalomyopathic mitochondrial DNA depletion syndrome (MDDS), their long-running and intensely fraught legal battle is over.
In that time Charlie’s name has become known worldwide. It has reached Downing Street, the White House and the Vatican. A case that dramatically pitted ethics against emotions, and medics against parents, would tax senior judges from the high court, the supreme court, and the European court of human rights (ECHR).
About £1.3m was crowdfunded by 83,000 wellwishers to help pay for experimental treatment in the US, and hundreds of thousands more signed petitions for him to be given the chance. It mobilised a “Charlie’s army” of supporters outside Downing Street, Buckingham Palace and the supreme court.
As his distraught mother told the high court on Monday: “One little boy has brought the world together and, whatever people’s opinions are, no one can deny the impact our beautiful boy has had on the world and his legacy will never die.”
Charlie’s parents were always determined to fight. Harnessing the power of social media, the crowdfunding page Connie Yates set up in January after finding an American doctor willing to offer her son a trial therapy called nucleoside reached its initial £1.2m fundraising target by April. It was to pay for him to travel by air ambulance to America, as well as the cost of treatment, which had never before been used on someone with Charlie’s condition.
The parents’ legal battle to be allowed to take him to the US, which began in the high court on 3 April, immediately attracted huge media attention. It was impossible to separate the complex legal arguments from the raw emotion visible in the anguished faces of Charlie’s parents.
Gard sat in court with his son’s toy monkey in his breast pocket. Charlie was the “apple of my eye”, he told the judge. He would do “anything for him”. “He deserves a chance,” he pleaded.
When, a week later, the judge ruled “with the heaviest of hearts” it was in Charlie’s interests that doctors at Gosh turn off life-support, Gard’s howl of “no” stunned the courtroom. The devastated couple immediately vowed to appeal. But the court of appeal, then the supreme court, and finally the ECHR in Strasbourg all came to the same conclusion.
“This isn’t about us being selfish, keeping him alive because we can’t bear to let him go. It’s because if we did not fight for this chance, we will have to live with the ‘what if’ for ever,” Yates told the Daily Mail, from their son’s bedside, which they left only to appear in court to continue their fight for what they believed was in their son’s best interests.
The ECHR delivered its majority ruling on 27 June, endorsing the British courts, and declaring that the decision was final, while Gosh pledged to offer more time and support for his parents to come to terms with the decision.
As Charlie’s Army mobilised through Facebook to demonstrate against the ECHR ruling outside Buckingham Palace on 2 July, however, a surprise intervention from the Vatican would prolong the couple’s hopes.
In a statement the Vatican announced: “The Holy Father follows with affection and emotion the affair of little Charlie Gard and expresses his closeness to his parents. He prays for them, hoping that their desire to accompany and care for their child until the end is not disregarded.” There was also an offer of help from a Vatican children’s hospital.
Pope Francis’s statement was interpreted by some as a shift in the Holy See’s position from earlier in that week when the Vatican’s bioethics advisory panel had noted the need to do whatever helps a patient, but also to sometimes accept the limits of medicine.
Hours later, and equally dramatically, there was an intervention by Donald Trump. The US president tweeted: “If we can help little #charliegard, as per our friends in the U.K. and the Pope, we would be delighted to do so.”
Members of the Trump administration had talked to Charlie’s family, a White House spokeswoman said, on 3 July. “Our goal is not to pressure but simply to be helpful if possible in this very difficult and heartbreaking situation.”
Trump’s lawyer Jay Sekulow tweeted: “I have contacted my office in Strasbourg, France to intervene in support of baby Charlie Gard’s family. We must always fight for life.”
On 7 July Gosh, whose staff had reported receiving thousands of “shocking and disgraceful” abusive messages, announced it had applied to the high court for a fresh hearing “in light of claims of new evidence relating to potential treatment” for Charlie’s condition.
In the following days, a petition of more than 350,000 signatures called on him to be allowed to travel to the US. An American pastor flew in from Washington to offer support. “The fight is not over,” Charlie’s parents tweeted.
As Charlie received a dramatic reprieve, to give his parents time to assemble any new evidence and for him to be examined by US neurosurgeon Michio Hirano, there were further developments across the Atlantic.
Congress voted to give the Gard family residence. Congressman Jeff Fortenberry tweeted: “We just passed an amendment that grants permanent resident status to #charliegard and family so Charlie can get the medical treatment he needs.”
Congress’s offer would not matter. Without the consent of the British courts, Charlie would be travelling nowhere.
In denouement to this extraordinarily emotional battle Charlie’s parents announced their decision to end their fight on Monday. Their “sweet, gorgeous, innocent little boy” would not reach his first birthday on 4 August, they announced.
“Time had run out,” their lawyer, Grant Armstrong, told the high court. They made their decision because a US doctor had told them it was now too late to give him nucleoside therapy.
“We only wanted to give him a chance of life,” his mother told the court in a statement. “A whole lot of time has been wasted,” she added.
She ended her statement: “Sweet dreams, baby. Sleep tight our beautiful little boy. Charlie Matthew William Gard. Our hero!”
The couple thanked the staff at Gosh who had looked after their son and they now hope to establish a foundation to ensure Charlie’s voice “continues to be heard”.
The hospital paid tribute to the bravery of the hard decision his parents had made. “The agony, desolation and bravery of their decision command Gosh’s utmost respect and humble all who work there,” it said in a statement.
The judge agreed. No parents, he said, could have done more.