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Image source, Hollie Dance
Archie Battersbee suffered brain damage in an incident at home on 7 April and did not regain consciousness
The family of Archie Battersbee have said nobody should go through what they had to and have called for an inquiry into the legal battle surrounding the withdrawal of his life support.
The 12-year-old, who was at the centre of a court row between his parents and doctors, died on Saturday.
In a statement, they said they were "stripped of all our rights".
Barts Health NHS Trust said its staff had provided "high quality care with extraordinary compassion".
Archie had been in hospital since being found unconscious at his home in Southend, Essex, in April.
He suffered severe brain injuries and needed life-sustaining support, including mechanical ventilation and drug treatment. He never regained consciousness.
The family called for a public inquiry into the role of the NHS and the High Court Family Division in end-of-life cases.
Archie Battersbee's mother Hollie Dance: "I'm the proudest mum in the world"
His mother Hollie Dance and father Paul Battersbee had asked the European Court of Human Rights (ECHR) to intervene in the case as they fought for life support to be continued, but were told it fell outside its scope.
His family then made bids to the High Court, Court of Appeal and ECHR to have him transferred to a hospice, but these were rejected.
'Backed into a corner'
In a statement released on Sunday, the family said the pressure of the process had been "unbelievable".
"We want something good to come out of this tragedy and the horrendous experience we have been put through by the system," they added.
"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.
"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.
"There must be an investigation and inquiry through the proper channels on what has happened to Archie, and we will be calling for change."
Image source, Hollie Dance
Image caption,Archie's family say they want "something good to come out of this tragedy"
After Archie's death, the trust expressed its condolences to the family and thanked the medical, nursing and support staff who had cared for him, often in "trying and distressing circumstances".
Baroness Ilora Finlay, professor of palliative medicine at Cardiff University, told the BBC: "The problem of the adversarial system, once it gets to court, is that it takes everybody's time away - from the family being at the bedside of the person who's dying and the clinicians it takes them away from the care of that patient and other patients - quite apart from the fact there are enormous costs involved for everybody.
"So anything we can do to try to avoid things escalating would be worth looking at.
"Of course there always will be some cases that do end up in court.
"It's not to say it's wrong to go down that route ever, but I do think it may be helpful if we can find a way of intervening early."
Ms Dance has previously called for reform through "Charlie's Law", a campaign by the parents of 11-month-old Charlie Gard, who were in a public battle with doctors in 2017.
Great Ormond Street Hospital said Charlie had an extremely rare genetic condition causing progressive brain damage and his life support should end, with the High Court ruling in its favour.
His family failed in a series of attempts to overturn the decision and since his death have called for parents to have more support and choice in the treatment of their child.
Timeline: How the story unfolded
7 April 2022
Archie is found unconscious by his mother after an incident at their home in Essex. He is taken to Southend Hospital.
8 April
Archie is transferred to The Royal London Hospital in Whitechapel where he has been treated ever since.
26 April
The NHS trust that runs the Royal London starts High Court proceedings by asking for Archie to undergo brain stem testing.
13 May
Mrs Justice Arbuthnot rules that brain stem testing should be carried out.
16 May
Two specialists try to administer brain stem function tests, but they are unable to as Archie did not respond to a peripheral nerve stimulation test, a precursor to the brain stem test.
25 May
A hearing is held to decide if further MRI scans should be conducted. Archie's parents did not consent on the basis that moving Archie could harm him.
27 May
The court approves further MRI scans, which are carried out on 31 May.
6-8 June
A final hearing is held to hear evidence on whether Archie's life-support treatment should continue.
13 June
The High Court judge rules that Archie is "dead" based on MRI scan results and that treatment could be withdrawn.
Image caption Hollie Dance, Archie’s mother, outside the High Court
Image copyright by PA
20 June
The family ask the Court of Appeal to reconsider the case.
29 June
The Court of Appeal says that a new hearing to determine Archie's best interests should take place.
11 July
A new hearing is held in the High Court with evidence given before Mr Justice Hayden.
15 July
Mr Justice Hayden rules that life-support treatment should end, saying continuing it is "futile".
25 July
Three Court of Appeal judges support the High Court ruling that treatment can end.
28 July
The Supreme Court rules out intervening in the case and supports the Court of Appeal ruling.
29 July
The family make an application to the United Nations.
Image caption Archie’s mother and father, Paul Battersbee, outside the Royal London Hospital
Image copyright by PA
30 July
A UN Committee writes to the UK government asking for a delay in withdrawing treatment while they consider the case.
31 July
The government asks for an urgent hearing to review the case.
1 August
The Court of Appeal refuses to postpone withdrawal of treatment until the UN can hear the case.
2 August
The Supreme Court refuse the family's application for permission to appeal the Court of Appeal ruling.
3 August
European Court of Human Rights refuses an application from the family to postpone the withdrawal of Archie’s life support.
4 August
Archie's parents make a legal application to move their son to a hospice for end of life care.
5 August
A High Court judge rules that Archie cannot be moved to a hospice for withdrawal of treatment.
6 August
Archie passes away at the Royal London Hospital after treatment is withdrawn in line with court rulings about his best interests. Members of his family are at his bedside.
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