A High Court judge has denied the parents of 8-month-old Indi Gregory the right to transfer their daughter to a hospital in Italy, for specialist treatment.
Mr Justice Robert Peel ruled at a private hearing on Thursday that it is in Baby Indi's 'best interests' to die in the UK, rather than receive specialist treatment at the Bambino Gesù Paediatric Hospital in Rome, funded by the Italian government.
Andrea Williams, who's representing the family, told Premier, that the situation is "really concerning".
"It's really dangerous that a child can be 'imprisoned', held against the parents wishes when they have alternative treatment. What is the point of that? There's no cost to the taxpayer. No cost to the NHS - privately funded air ambulance travel, and then funded in the hospital. Literally, what good reason do state systems have to prevent that from happening? It's just cruel".
The stay of execution, which is a legal term that prevents Nottingham University Hospitals NHS Trust from removing Indi's life-support, which was set to expire at the same time Mr Justice Peel released his judgment, has now been extended until 2pm on Friday 3 November.
Indi is battling a rare mitochondrial disease and her parents have maintained that despite her disability, she is a happy baby who responds to their touch. They say there is also evidence of improvement in her condition.
Justice Peel made his decision having considered expert medical evidence from the NHS Trust, and after requesting the latest video material of Indi, filmed by her father.
Mr Dean Gregory, Indi's father, has instructed lawyers to appeal the ruling. The family has been locked in a legal battle with the NHS Trust for several months.
According to Christian Legal Council new medical expert evidence, backed by the Italians, suggests a non-invasive treatment could allow Indi to breathe on her own.
A specialist Air Ambulance service is prepared to work with the family and clinicians at the Queen's Medical Centre in Nottingham to facilitate the transfer to Italy.
However, it would require a risk assessment with full cooperation from the treating clinicians, which has been rejected.
NHS paediatricians caring for Indi say her condition means the move would cause her unnecessary suffering, and it's in her 'best interests' to be allowed to die.
Mr Gregory described the latest decision as 'sickening' , and launched an immediate appeal. He said they want to pursue the Italian offer because, "the only alternative offered by the Trust is Indi’s death.
“Claire and I want to give our daughter every chance to survive and to improve, and it is very disturbing that Indi’s current treating clinicians will not cooperate with the Air Ambulance specialists.
"There is nothing to lose for us or for Indi.
"Given that the medical evidence suggests she has a reasonable chance to survive and to improve, we believe it is in her best interests to be given that chance."
With the 2pm extension of Indi's life support, Williams said the legal team are in a barely believable race against time.
"It's happening in real time as I speak to you. The lawyers are again preparing the papers in order for us to go to the Court of Appeal tomorrow (Friday). And there is another reprieve for Indi - when all the time she could have been just now right now she could be right now last week, she could be in an air ambulance going to Rome."
She's asking people to pray for the family: "Pray for precious Dean and Claire and their children and for baby Indi. We continue to pray for miraculous recovery... so pray for them to have strength and the peace of God in the midst of all of this... and for the legal team."
Williams insisted the case has exposed an opaque legal system that is ill-equipped to treat parents with appropriate compassion.
"We need transparency in the court system. And we need a system that is different when life and death decisions are being made and there is a dispute over what to do. We need a reconciliation system or mediation system, so that parents are not thrown into this into a situation that is terrifying."