The mother of 12-year-old Archie Battersbee, has written an open letter to Health Secretary Stephen Barclay, urging him to help save her son's life.
Hollie Dance has asked the government to forbid doctors taking care of her son from withdrawing him from life-support.
She wrote: "If this happens, this will be an extraordinary cruelty, and a flagrant breach of Archie's rights as a disabled person. Archie is entitled to have the decisions about his life and death, taken by the NHS and UK courts, to be scrutinised by an international human rights body. Hastening his death to prevent that would be completely unacceptable."
However, according to the Christian Legal Centre, which is supporting Archie's parents, the hospital Trust caring for Archie said that they will carry on with plans to remove life-support on Monday 1st August despite the intervention. The lawyers claim UK government is yet to respond to the UN CRPD interim measures.
According to PA, Barts Health NHS Trust, which is caring for Archie Battersbee, said in a letter to his parents that "all fluid infusions, medications, including vasopressin will be stopped" at 2pm on 1st August.
The letter comes after the UN Committee on the Rights of Persons with Disabilities (UN CRPD) issued an 'interim measures' injunction stating that the UK government must keep Archie alive while the committee considers the case. The injunction states that life-support should not be removed despite rulings from the highest UK courts.
The families' lawyers had made a last-ditch application to the UN CRPD on Friday following the refusal of the UK's Supreme Court to intervene in the case the day before.
The court order for the removal of life-support came into effect at 2pm on Thursday but the family lawyers sought urgent assurances that Royal London Hospital would not begin removing treatment while the parents apply to the UN CRPD.
Archie's parents wanted the UN CRPD to consider Archie's case, arguing it has a protocol that allows individuals and families to make complaints about violations of disabled people's rights.
The family argue that stopping treatment would be in breach of the UK's obligations under Articles 10 and 12 of the UN Convention on the Rights of People with Disabilities, and Article 6 of the UN Convention on the Rights of Children.
A Department of Health and Social Care spokesperson said: "We recognise 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 in due course."
The letter
Writing to the Secretary of State for Health and Social Care this afternoon, Hollie wrote:
Dear Mr Barclay,
You will be aware of the awful tragedy our family is going through since our son Archie suffered severe brain damage in April as a result of an online challenge gone wrong. We are grateful to doctors and nurses at Royal London Hospital for the treatment and care given to Archie in the past four months. However, I am sorry to say that throughout that period, our pain and distress has been being much aggravated by the actions of two or three senior doctors at the hospital, and the management of Barts Health NHS Trust.
From day one, the family as well as the treating clinicians have been put under daily pressure from the Trust to give up on Archie, withdraw life support and let him die. After only three weeks, we were dragged into Court at a few hours' notice. Since then, throughout these three months, we have been rushed from one court hearing to another every few days, having to fight for Archie's life against a generously funded army of lawyers and NHS managers.
Throughout these months, we were never given even a few days space to cope with the family tragedy. You will be aware that our case now is before the UN Committee on the Rights of Persons with Disabilities, who have last night issued an 'Interim Measures' injunction to the UK government to keep Archie alive while the Committee considers the case. Under Article 4 of the Optional Protocol to the UN Disability Convention, the interim measures are binding on the United Kingdom as a matter of international human rights law.
Devastatingly, the Trust's lawyers have responded by telling the family that the Trust intends to defy the UN injunction and to proceed to remove life support from Archie as early as on Monday 1 August.
If this happens, this will be an extraordinary cruelty, and a flagrant breach of Archie's rights as a disabled person. Archie is entitled to have the decisions about his life and death, taken by the NHS and UK courts, to be scrutinised by an international human rights body. Hastening his death to prevent that would be completely unacceptable.
I trust that you will now act immediately, as a member of the government responsible for the NHS, to ensure that this does not happen, and our country honours its obligations under the international human rights treaties which we have signed and ratified.
