It’s been a painfully traumatic few months for the parents of Charlie Gard, with stress levels inevitably at an all-time high.
Connie Yates and Chris Gard, from west London, have been fighting tooth and nail for permission to take their poorly tot to America for experimental nucleoside therapy.
The 11-month-old is said to be in the “terminal stages” of a rare condition called mitochondrial DNA depletion syndrome, and has brain damage, but his mum and dad are adamant that he can make a recovery in the right hands.
Today, it’s been reported that tensions spilled over at a high-court hearing, with the devastated parents storming out after a disagreement with the judge.
The court had been discussing the size of Charlie’s head, with doctors claiming that his skull had not grown in three months – indicating a lack of brain function. They believe the lad should be moved into palliative care, where he should die with dignity.
But Charlie’s mum Connie, 31, responded by saying that she’d measured the lad’s head this morning, and that her measurements differed to the hospital’s by around two centimetres.
At this point, Mr Justice Francis stepped into the debate, ordering an independent person to take a measurement in the next 24 hours.
“It is absurd that the science of this case is being infected by the inability to measure a child’s skull,” he said.
Chris, 32, lost his temper and said: “I thought this was supposed to be independent.”
Shortly after, the couple headed for the exit.
Charlie is one of only 16 children who have been diagnosed with the rare condition. It is believed that both Chris and Connie were unwittingly carrying the gene.
The child cannot move his arms or legs, nor open his eyes. He can only breathe through a ventilator.
But his parents are refusing to give up hope, and have raised around £1.3million to take him to America for treatment.
But they can’t go anywhere until the courts allow them to. At a previous hearing, it was determined that Charlie would not be allowed to leave the country. Now his parents are appealing.
Chris has said: “If he’s still fighting, then we’re still fighting.”