Archie Battersbee’s family have been told by letter how the little boy will have his life-saving treatment taken away tomorrow in a procedure they say today is ‘cruel and wrong’.
Barts Health NHS Trust said in the note to his parents Hollie Dance and Paul Battersbee “all fluid infusions, medication including vasopressin will be stopped” at 2pm on August 1.
In a heartbreaking sentence, he warns them that immediately the family will be allowed into the room, meaning others will be banned.
And in another particularly insensitive part of the post, the trust says a doctor will need to “evaluate Archie regularly to confirm that the heart has stopped beating”.
One of the little boy’s aunts had been booked on a flight to come from Italy to see him, but will now be unable to do so under Trust rules.
The letter – delivered to MailOnline with the family’s permission – arrived despite the UN’s call for a pause in the process.
A statement from Hollie and Paul said: ‘The Trust took us as a family through the courts at breakneck speed from April 27 until the Supreme Court’s final decision this Thursday evening.
“The Trust has never attempted to agree any compromise with us on matters large or small. For example this Friday, our lawyers received a letter from the Trust demanding that all videos of Archie and his medical equipment taken on the ward, which we believe is evidence of an improvement in the state of Archie (like his attempts to breathe independently) be removed immediately. ; and threatened legal action for an alleged data protection breach.
“As a family, we are very disappointed that the management of the Trust has chosen to hide behind euphemisms and mislead the public. It’s hard to see a reason for this behavior except to know that what they are doing is cruel and wrong.
It comes after Ms Dance urged the Health Secretary to ‘act immediately’ to stop the end of treatment, saying it would be ‘a gross breach’ of her rights.
The NHS Trust letter to Archie’s parents, shared with MailOnline with their permission
Archie, from Southend-on-Sea, Essex, suffered brain damage at home on April 7 and is in a coma
Archie’s parents’ request to prevent the shutdown of his life-saving device has been denied by the court
The letter, sent over the weekend, also said: “We understand that any discussion around Archie’s treatment withdrawal is very difficult and painful.”
“However, we want to make sure you and your family are involved as much as you want.”
Ms Dance and Paul Battersbee, the youngster’s parents, will be told on Monday morning how the removal process is to be carried out, in a bid to ‘preserve Archie’s dignity’, the letter read.
He continued, “You or one of the family members may want to lie on Archie’s bed with him or have him in your arms, if that should be practically possible.”
A High Court judge had decided that ending treatment was in Archie’s best interests, after considering the evidence.
Ms Dance and Mr Battersbee, who are estranged but both live in Southend, Essex, failed to persuade Court of Appeal judges to overturn the decision and Supreme Court justices refused to to intervene.
Archie’s parents are supported by the campaign organisation, the Christian Legal Centre.
Writing to Health Secretary Stephen Barclay on Saturday, Ms Dance said: ‘If this happens it will be extraordinary cruelty and a gross breach of Archie’s rights as a disabled person.
Doctors have been given permission to shut down Archie’s life support device, but his parents are trying to continue the fight to keep him alive. Pictured, Archie is in hospital
In their letter, Archie’s parents, Ms Dance and Mr Battersbee, implore Health Secretary Steve Barclay to intervene to prevent ‘extraordinary cruelty’ from ending their son’s life.
Archie with his mother Hollie Dance (left), brother Tom Summers and sister Lauren Summers
“Archie has the right to have the decisions about his life and death taken by the NHS and UK courts reviewed by an international human rights body. Hastening his death to prevent this would be totally unacceptable.
“I hope you will now act immediately, as a member of responsible NHS government, to ensure this does not happen and that our country honors its obligations under the international human rights treaties we have signed and ratified.”
They also asked the United Nations to intervene in a “last resort” request.
The UN Committee on the Rights of Persons with Disabilities has written to Archie’s parents and legal team to say it has “requested the state party [the UK] to refrain from withholding life-saving medical treatment, including mechanical ventilation and artificial nutrition and hydration, from the alleged victim while the case is under review by the committee”.
He added: “This request does not imply that a decision has been made on the merits of the matter under consideration.”
The family said stopping the treatment would breach the UK’s obligations under international human rights law.
Archie’s parents have asked hospital bosses to continue treatment until the UN reviews the case.
London judges heard Ms Dance found Archie unconscious with a ligature over his head on April 7.
She thinks he may have participated in an online challenge.
The young man did not regain consciousness.
Doctors treating Archie at the Royal London Hospital in Whitechapel, east London, believe he is brain dead and say continuing life-sustaining treatment is not in his best interests.
Alistair Chesser, chief medical officer at Barts Health NHS Trust, said on Friday that a “further delay” in starting to provide “palliative care” to Archie would be “not appropriate” without a court order.
A spokesperson for the Department of Health and Social Care said: ‘We recognize that this is an exceptionally difficult time for Archie Battersbee’s family and our thoughts are with them.
“We have received the letter and will respond to it in due course.”