Archie Battersbee died on Saturday afternoon, shortly after the withdrawal of life support after his parents exhausted all available legal routes in their fight to keep him alive.
Clinicians at the Royal London Hospital began the process of switching off the machinery keeping the 12-year-old alive at 10am after the courts had ruled that any continued efforts were against his best interests.
A few hours later Hollie Dance, Archie’s mother, emerged from the hospital in tears, holding onto relatives for support, to break the news of her son’s death to waiting supporters.
Fighting back tears, she said: “In sadness, Archie passed at 12.15pm. I would just like to say I am the proudest mum in the world. He was such a beautiful little boy. He fought right until the very end, and I am so proud to be his mum.”
Intervening on her behalf after she was overcome by grief, Ella Carter, her sister-in-law, said: “He was taken off medication at 10 o’clock, and his stats remained completely stable for two hours until they completely removed ventilation and he went completely blue.
“There is absolutely nothing dignified about watching a family member or a child suffocate. No family should ever have to go through what we have been through – it is barbaric.”
The removal of life support by Bart’s Health NHS Trust came after the European Court of Human Rights declined to intervene further in the case following the High Court’s rejection of a request by Archie’s family for him to be taken to a hospice.
Doctors thought there was risk it might even hasten his death and it was not in his best interests to be moved.
As Archie’s short life began to draw close on Saturday, well-wishers gathered to express sympathy, leaving flowers and lighting candles outside the hospital where he had been on life support for more than 100 days.
Kerry Walton, a hairdresser from his home town, Southend, laid a bouquet at the feet of the statue of Queen Alexandra, one of the hospital’s most famous benefactors.
“I’ve got two children aged seven and two and I just can’t imagine how Archie’s parents must be feeling,” said the 36-year-old. “As a mother, I can appreciate what Archie’s mum was trying to do – gain more time for her son. If it was me I’d try to get hope from anywhere, even just a glimmer of it.
“I wanted to pay my respects quietly and peacefully, like others are doing. It’s just so sad.”
Soon others followed, an impromptu shrine springing up in the minutes before doctors switched off Archie’s life support.
Evelina Benekeraitiene, 33, laid out 14 candles around a handwritten sign with Archie’s name on it drawn by her son. “My son is exactly the same age as Archie and even looks like him,” she said.
“It’s heartbreaking for any parent, and they shouldn’t have to go through this.”
As 10 o’clock struck and doctors in the building began the process of taking Archie off life support and making him as comfortable as possible, in accordance with the court’s instructions, the small crowd outside stood in quiet contemplation.
Shelley, who works at the hospital and is familiar with matters of life and death, said: “It’s heartbreaking. I’ve got a little boy myself and I can’t imagine what it’s like. I don’t want to.”
Andrea Williams, the chief executive of the Christian Legal Centre, which supported the family’s case, said: “Our thoughts, prayers and support are with Archie’s family at this tragic moment. It has been a privilege to stand alongside them.
“The events of the last few weeks raise many significant issues including questions of how death is defined, how those decisions are made and the place of the family.
“No one wants to see other families experience what they have been through. We need to see urgent review and reform of the system.”
As doctors began the process of taking Archie off life support and making him as comfortable as possible, the small crowd stood in quiet contemplation.
Archie suffered brain damage thought to have happened after he took part in an online challenge at his home on April 7.
Doctors treating him in east London concluded early on that he was brain-stem dead and maintained that continued life-support treatment was not in his best interests.
But his family insisted treatment should continue, saying the youngster’s heart was still beating and he had gripped his mother’s hand.
Ms Dance had spent every day since her son’s accident at his bedside, mounting a vigil in the desperate hope he would start showing signs of life and wake up.
Until life support was withdrawn, he had been kept alive by a combination of medical interventions including ventilation and drug treatments.