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Archie Batttersbee's family have said 'no family must go through this' following his death on Saturday (6 August).
They underwent a lengthy legal battle to keep his life support switched on after his mum, Hollie Dance, found him unconscious at home in April. Hollie was convinced he was improving:
She said her family were 'stripped of all of our rights' after doctors said it was 'very likely' he was brain stem dead.
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The family said in statement on Sunday (7 August) that what they went through was 'unbelievable'.
"We want something good to come out of this tragedy and the horrendous experience we have been put through by the system," they said.
"No parent or family must go through this again.
"We have been forced to fight a relentless legal battle by the hospital trust while faced with an unimaginable tragedy.
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"We were backed into a corner by the system, stripped of all our rights, and have had to fight for Archie's real 'best interests' and right to live with everything stacked against us.
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"This has now happened too often to parents who do not want their critically-ill children to have life-support removed.
"There must be an investigation and inquiry through the proper channels on what has happened to Archie, and we will be calling for change."
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Archie was found unconscious by his mum at their home in Essex, and Hollie suspects that he had been taking part in an online challenge.
It was ruled by doctors and judges at the High Court that continuing life support treatment was not in Archie's best interests.
Judge Arbuthnot's ruling on 13 June said: "I find that Archie died at noon on May 31, 2022, which was shortly after the MRI scans taken that day."
"I find that irreversible cessation of brain stem function has been conclusively established.
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"I give permission to the medical professionals at the Royal London Hospital to cease to ventilate mechanically Archie Battersbee."
It was then ruled by a second High Court Judge on 15 July that Archie's life support should be withdrawn.
Judge Justice Hayden ruled that continued treatment for Archie was 'futile' and said it is 'unable to prolong his life'.
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The judge explained that the 12-year-old had 'significant injury' to 'multiple areas' of his brain and had not 'regained awareness at any time'.
While Archie's family continued to fight the decision until the end of his life, they eventually had no choice but to say their goodbyes to him.
Hollie also attempted to have him moved to a hospice after all appeal avenues failed but this request was refused as Archie was classed as too unstable.
Topics: News
Emma Guinness