Archie Battersbee's family have demanded an inquiry following his death.
The 12-year-old died at 12.15pm yesterday (6 August) after his life support was switched off.
His mother Hollie Dance had tried desperately to overturn the medical decision that there was nothing to be done to save her son's life.
However, the High Court decided it was in Archie's best interests to have his life-sustaining treatment removed.
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After accepting the judgement, Ms Dance asked to have Archie transferred from Royal London Hospital to a hospice before having support pulled.
She told the court that she wanted her son to 'spend his last moments' together with family privately.
But in a ruling on Friday (5 August), Mrs Justice Theis concluded it was not in Archie’s best interests to be moved.
The young boy's family have now shared their heartbreak at how he was treated, and have demanded that this never happen again.
In a statement released by Christian Concern, Archie's family said: "We want something good to come out of this tragedy and the horrendous experience we have been put through by the system.
"We have been forced to fight a relentless legal battle by the Hospital Trust while faced with an unimaginable tragedy.
"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.
"This has now happened too often to parents who do not want their critically ill children to have life-support removed."
They added that the 'pressure of the process has been unbelievable'.
"There must be an investigation and inquiry through the proper channels on what has happened to Archie, and we will be calling for change."
Archie had been in a comatose state since being found unconscious at home in Southend, Essex, in April.
Ms Dance confirmed that Archie had died yesterday afternoon.
Speaking outside the hospital, Ms Dance said she was devastated by the loss of her son but was incredibly proud of the bravery Archie showed.
She told the assembled media: "Archie passed at 12.15pm today. And can I just say I am the proudest mum in the world - such a beautiful little boy, and he fought right until the very end, and I am so proud to be his mum."
Ella Rose Carter, the fiancée of Archie's eldest brother Tom, said no child should ever have to go through what Archie did.
She said: "He was taken off medication at 10:00am, his stats remained stable until two hours later when they removed the ventilation.
"There is absolutely nothing dignified about watching a family member or a child suffocate.
"We hope no family has to go through what we have been through. It's barbaric."
If you have experienced a bereavement and would like to speak with someone in confidence contact Cruse Bereavement Care via their national helpline on 0808 808 1677
Topics: No Article Matching, UK News, Health
Dominic Smithers