The interventions of the pope and the US president have been the biggest help in keeping 11-month-old Charlie Gard alive, the critically ill baby’s mother has said.

Connie Yates acknowledged that although the probability was slight, she said Charlie had a “chance to get better”, adding: “I would not be able to sit there and watch my son suffer and be in pain.” She said Charlie, who has a rare mitochondrial disease, was able to derive pleasure from life and still “enjoyed his tickles”.

She spoke on Monday as the case was due to return to court – the latest hearing in a protracted legal fight over whether or not he should be taken abroad for experimental treatment that his parents believe could save his life.



Quick Guide Charlie Gard and mitochondrial disease Show What is wrong with Charlie Gard? Charlie has a very rare mitochondrial disease caused by a genetic defect inherited from his parents. The official diagnosis is infantile onset encephalomyopathic mitochondrial DNA depletion syndrome, referred to generally as “MDDS”. What is mitochondrial disease? Mitochondria supply energy to the cells in the human body. Mitochondrial failure leads to cellular injury and cell death. When multiple cells fail, the body’s organs are damaged and shut down. These diseases are usually fatal and kill children, although sometimes they don’t show up until adulthood. Where they don’t kill, they cause serious permanent brain damage. What is the damage to Charlie? Charlie is in intensive care at Great Ormond Street hospital in London, the leading children’s hospital in the UK. Life support machines are keeping him alive. The hospital says that he has severe brain damage, cannot move or breathe by himself, is deaf and has epilepsy. It says his heart, liver and kidneys are also affected. His eyelids cannot stay open and because of the weakness of the muscles, his eyes point in different directions and the damage to the brain will not allow his sight to develop.

Pope Francis and Donald Trump both spoke in support of Yates and Charlie’s father, Chris Gard, soon after they lost their appeal to the European court of human rights at the end of last month.



Doing so “turned it into an international issue”, Yates told BBC Radio 4’s Today programme. She agreed with the premise that the interventions had been the “single biggest factor” in ensuring that life-sustaining care was still being administered to her son, adding: “There are a lot of people who are outraged about what is going on.”

Doctors at London’s Great Ormond Street hospital have argued that the therapy available to him in the US was unlikely to have a beneficial outcome. They sought permission to withdraw life-sustaining treatment and provide only palliative care, believing that further treatment would be likely to cause Charlie suffering.



The British courts agreed, but on Friday the hospital applied to the high court for a fresh hearing after doctors from the Vatican children’s hospital claimed unpublished data suggested nucleoside therapy offered some chance of improvement.

Yates also cited the case of Ashya King, whose parents prompted an international manhunt when they took their son from hospital without doctors’ permission in 2014. They were arrested in Spain but later won permission to take him for treatment in the Czech Republic that was not available to him on the NHS.



Addressing the Gard case earlier, the first secretary of state, Damian Green, said: “None of us can imagine what Charlie Gard’s parents must be going through.” But he said the courts and doctors must be allowed to do their work, in conjunction with the parents.