The six-year-old, who has not been named, has a rare neurological condition which doctors say is incurable. Birmingham Women’s and Children’s NHS Foundation Trust had asked the High Court to decide which moves were in the girl’s best interests. Experts argued that the child should not receive long-term ventilation and instead be transferred to palliative care. The girl’s parents, who arrived in the UK in 2016 as part of the Syrian Resettlement Scheme for Vulnerable Persons, disagreed and called for ventilation in their home. They say their daughter’s condition improves when she is in her home environment. Delivering his judgment, Mr Justice Hayden described the child’s condition as “relentlessly neurodegenerative”. He said: “I have not seen any evidence [the child] experiences any benefit from life.’ Describing her family as “incredibly brave and resilient” and denying their wishes to have their daughter on long-term ventilation at home, Mr Justice Hayden acknowledged the child was “suffering fewer convulsions at home” but said she was “over treatment that can make her better.” The parents accept that he will not recover, but do not agree that a ‘care ceiling’ should be imposed. The court had heard how the girl was born in Lebanon after her parents fled Syria. He had begun to fall ill about four years ago, after arriving in England. The family’s legal team say the parents have largely managed their child’s needs at home, particularly during the pandemic, when they did so with very little formal care and only the support of community children’s nursing services. During the hearing, the girl’s father, who fled the Syrian war, said he had seen his brother killed in Syria, saw his father die and that on the way to the UK the family had saw his friends die. “I know what it’s like to die,” he had told the court. “[My daughter] it doesn’t die.” Shortly after testifying last week, the father clutched his chest and collapsed in court. He was taken to hospital but appeared well at subsequent hearings.
