Charlie Gard, the terminally ill baby at the centre of a high-profile court battle, has died.
The infant passed away in a hospice just days before his first birthday under the terms of an end-of-life plan agreed by a High Court judge.
The news was confirmed on Friday evening and Charlie’s mother, Connie Yates, said simply: “Our beautiful little boy has gone, we are so proud of you, Charlie.”
An end-of-life plan for baby Charlie, who has a rare genetic disease, was approved on Thursday by High Court judge Nicholas Francis.
He said the 11-month-old would be kept at Great Ormond Street Hospital (GOSH) on life support, before being moved to the hospice where the artificial ventilator would be switched off and Charlie would “inevitably” die.
Chris Gard and Ms Yates this week ended their five-month legal fight to take their son to the US for experimental treatment after new tests showed he had suffered irreversible muscular damage.
Charlie, born on 4 August 2016, inherited the faulty RRM2B gene that affects the cells responsible for energy production and respiration, leaving him unable to move or breathe unaided.
His parents, a couple in their 30s from Bedfont in west London, wanted to give him experimental, unproven nucleoside therapy, provided by American neuroscientist Michio Hirano.
Throughout the long court process, which saw an appeal rejected by the European Court of Human Rights, doctors at Great Ormond Street maintained the treatment had little chance of success and it was kinder for life support to be switched off.
The case caused an international furore, with both Donald Trump and Pope Francis offering to help the sick baby and American lawmakers making efforts to grant him permanent residency in the US so he could fly there for treatment.
A fresh hearing was opened in the High Court after claims of new evidence from Dr Hirano, who flew to London to examine Charlie and requested a new MRI scan.
Following the results of the scan, and acknowledging the new therapy was doomed to failure, the couple first requested their son be allowed to die at home.
However, they later agreed Charlie could die in a hospice, asking the judge to let them pay for a private medical team to oversee his final hours.
They had pleaded with Mr Justice Francis to let them spend days with their son before his death, but GOSH argued it was not in his best interests to spend a long period under palliative care.
Legal proceedings have been fraught, with frequent verbal clashes between the hospital’s lawyers and Charlie’s parents.
Mr Gard shouted “evil” in court, while Ms Yates screamed and broke down in tears after they were told the new MRI scan results made for “sad reading”.
The couple also said they had been victims of a “backlash” after Great Ormond Street revealed its staff had received death threats related to the case.
It's a shame the parents weren't allowed to at least be with their child in the comfort of of their home. The UK was afraid the child would have been saved in the US and they would look like lessers to the international community. They really played a terrible game with the child's life. RIP to little Charlie and may his parents be comforted.
