Charlie Gard’s parents appeared in court again Friday to discuss the next step in his case.
In the course of the hearing, British high court Justice Francis said their son cannot be moved to the United States for treatment without a court order, squashing hope that a move to grant him residency in the U.S. would help him, according to The Independent.
Earlier this week, U.S. Congressional leaders approved a measure to grant Charlie and his parents permanent residency status in an effort to make it easier for him to receive an experimental treatment. Pro-life Congresswoman Jaime Herrera Beutler, R-Washington, led the effort; her daughter also was diagnosed with a fatal condition but survived because of an experimental treatment.
Charlie’s parents and his hospital are involved in an on-going legal battle over his medical care. The 11-month-old British infant suffers from a mitochondrial disease and brain damage.
Chris Gard and Connie Yates want to take their son to the United States for an experimental treatment. They raised more than $1.5 million for his care. His parents said they know the chance of the experimental treatment working is slim, but they want to try anyway for Charlie’s sake.
However, the courts and hospital have refused to allow them to transfer their son to another hospital. About a month ago, the European Court of Human Rights ruled that the hospital can remove Charlie’s life support and allow him to die. The hospital recently agreed to consider new evidence involving Charlie’s condition before taking him off the ventilator.
Justice Francis will consider the new information Monday and Tuesday in court.
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Here’s more from the report:
The judge also said Mr Gard and Ms Yates cannot take Charlie abroad without a court order, despite efforts by US Congress to grant him permanent residency in the country so he can fly there for treatment, according to [legal expert and journalist Joshua] Rozenberg.
Charlie, who was born on 4 August 2016, has a faulty RRM2B gene, which affects the cells responsible for energy production and respiration, leaving him unable to move or breath without a ventilator.
On Friday, the high court judge also had stern words for protesters outside Great Ormond Street Hospital, where Charlie is located. Justice Francis said protesters for Charlie have disturbed other patients and threatened staff, and he warned them to stop, the report states.
The Daily Star reports more:
The judge examined issues at a preliminary hearing today and said he would need to know whether there was “new material” which could make a “difference”.
[Charlie’s parents] say there is new evidence and want Mr Justice Francis, who in April ruled in favour of Great Ormond Street and said Charlie should be allowed to die with dignity, to change his mind.
Last week, Mr Justice Francis suggested that the American specialist – Michio Hirano, a professor of neurology at Columbia University Medical Centre in New York – should travel to London to meet Great Ormond Street doctors and other clinicians.
Dr Hirano examined Charlie on Monday and Tuesday.
Mr Justice Francis is expected to analyse issues in more detail at another hearing on Monday.
Charlie’s parents also released a photo this week that shows him appearing to look at a toy; the hospital says the boy is blind and cannot move.
The hospital maintains that Charlie’s case is hopeless because he does not have a chance of any “quality of life,” according to the Birmingham Mail. Doctors caring for Charlie at the London hospital unanimously agree that it would be best for him to have his ventilator withdrawn and allowed to die, according to the hospital.
However, Dr. Michio Hirano, MD, a Harvard-trained neurologist, examined Charlie this week to provide his opinion about experimental treatment. He previously said he thinks the 11-month-old has a chance of benefiting from the therapy.
Despite all of his problems, Charlie’s parents – and millions like them – believe that Charlie is a valuable, living human being who should be given a chance to live.
His mother told told Good Morning Britain previously, “I’ve heard from doctors that there’s around a 10 percent chance of this working for Charlie so I think that’s a good enough chance to take.”
Yates said she does not want her son to suffer. She said it has been “absolute living hell” to wait and wonder when the hospital might end his life support.
“He’s our own flesh and blood and we don’t even have a say in his life whatsoever,” Yates said. “We are not bad parents, we are there for him all the time, we are completely devoted to him and he’s not in pain and suffering, and I promise everyone I would not sit there and watch my son in pain and suffering, I couldn’t do it.”