The tragic death of Archie Battersby it is the latest in a series of cases that have seen devastated parents clash with the courts and the UK health system.
Behind each of them stood the same painful – perhaps unanswerable – question: what is life and who should decide when it ends?
Alfie Evans was just 23 months old when he died in 2018 after doctors came Liverpool stopped the treatment.
He was in Alder Hey Children’s Hospital for more than a year after the seizures. Doctors diagnosed a degenerative neurological disease – although they were never able to definitively identify it – and he was placed on a ventilator.
His parents Tom Evans and Kate James, from Bootle, Merseyside, wanted to take him to Rome for specialist treatment but this was blocked by Alder Hey, with medics saying the treatment would not work and was “not in Alfie’s best interests”.
During the High Court hearing, the hospital produced scans which showed “catastrophic degradation of his brain tissue” and argued that further treatment was not only “useless” but also “unkind and inhumane”. They said to let him die.
An exhaustive legal process followed, which also took the case to the Supreme Court and the European Court of Human Rights. Pope Francis intervened at one point and said that Alfie should be allowed to go to Italy. The supporters, who called themselves Alpha’s Army, began gathering at the hospital every day.
However, the young man was finally taken off life support and he died on April 28, 2018. His parents claimed the decision was wrong.
The case echoed that of Charlie Gard, who died less than a year earlier in July 2017, just a week before his first birthday.
He was born with a rare form of mitochondrial disease and spent most of his life at Great Ormond Street Hospital in London.
By the time he died, he could not open his eyes or move his limbs and could not breathe without a ventilator.
His parents, Connie Yates and Chris Gard, from west London, fought a five-month legal battle to have him flown to the US for experimental treatment, and his case won the sympathy of then-President Donald Trump. Around £1.3m was raised to fund the procedure and 350,000 people signed a petition to allow the family to travel across the Atlantic.
Doctors, however, were convinced the treatment could not work and said the child should be allowed to die peacefully in the UK.
In the High Court, the Supreme Court and the European Court of Human Rights, judges agreed with the doctors. He was eventually transferred to hospice where his life support was withdrawn.
Yet families sometimes win these battles.
The family of Tafida Rakib, who is severely disabled, won a landmark case in 2019 allowing them to fly her to Italy for treatment after doctors said her life support should be withdrawn.
The girl, who was five months old at the time, was put on artificial ventilation after suffering a brain injury, and doctors at the Royal London Hospital asked her to withhold help.
But mother Shelina Begum and father Mohammed Raqib won a subsequent legal battle in the High Court and were allowed to fly to Genoa in October that year.
Today, Tafida remains alive in a hospital in Italy.
Speaking in March, Ms Begum said: “The child who they said would die in two weeks is still alive. I let go, my anger is gone, but she is living proof that they were wrong and she was right.’