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The mother of the critically ill British baby Charlie Gard has called for permission to take him to the US for experimental treatment because "there's nothing to lose".
Charlie's parents, Connie Yates and Chris Gard, spoke to supporters and members of the press at a rally on Sunday near Great Ormond Street hospital in London, where he is being treated.
Mr Gard said the hospital was fantastic and its doctors were specialists in a lot of conditions, but not Charlie’s. “The specialists are in America and that’s where we want to go,” he said.
“He should have had this chance a long time ago now. They said that it wasn’t fair to leave him on the ventilator for three months for a treatment they didn’t think was going to work. He’s now been left for seven months with no treatment.”
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Acknowledging the treatment only had a 10 per cent chance of working, Ms Yates said it was worth trying anyway. “He’s our son, he’s our flesh and blood. We feel that it should be our right as parents to decide to give him a chance at life. There is nothing to lose, he deserves a chance.”
Thanking the public and the press for their support, she added: “Let’s get Charlie the treatment he deserves. If he is still fighting, we are still fighting.”
Later Ms Yates said: “I absolutely believe this medication will work. I’m not a doctor but I feel like I am an expert in his condition now.”
She accepts not everyone would agree with her and her partner’s position but maintains their son is not suffering.
“There’s a lot of misinformation out there in the media, but that happens, you’ve got to take that,” she said. “But basically we wouldn’t be able to sit there and watch him in pain and suffering.
“We’re not like that, we’re not evil. We’re not doing this for us. He’s our son. We want what’s best for him.”
The case will return to the high court on Monday afternoon to hear fresh arguments following claims of “new information” from researchers at the Vatican’s children’s hospital.
The couple spoke after two congressmen said Charlie should be given residency in the US so he can receive the treatment in the country. Mr Gard and Ms Yates are also preparing to launch a renewed legal bid for treatment.
The Republican congressmen Brad Wenstrup and Trent Franks are expected to table a bill in the US House of Representatives on Monday to bring Charlie and his parents to the US.
In a joint statement, the US politicians said: “Our bill will support Charlie’s parents’ right to choose what is best for their son, by making Charlie a lawful permanent resident in the US in order for him to receive treatments that could save his life.
“Should this little boy to be ordered to die because a third party, overriding the wishes of his parents, believes it can conclusively determine that immediate death is what is best for him?”
Neena Modi, president of the Royal College of Paediatrics and Child Health, said the considerable media attention and interventions made by individuals such as the pope and Donald Trump had been "unhelpful".
In an open letter, Ms Modi said she had been asked why doctors have not commented on the specifics of the case.
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She said: “The reason is the duty of doctor-patient confidentiality. This means that only the family, the doctors treating Charlie, and now the legal teams involved know the details of complex issues that define his situation.
“These issues - unknown to us and all those voicing opinions - will have been considered very carefully in reaching any decision. This is why interventions by external agencies or individuals, no matter how well-intended, are unhelpful.”
As well as being heartbreaking for his parents, Ms Modi said the situation has also been difficult for everyone involved, including the doctors and nurses looking after him.
“Unfortunately situations such as this that involve withdrawing life-sustaining treatment are not uncommon and fall within the responsibilities of many paediatricians.”
Decisions on withdrawing life support are “not made lightly” and often never reach the courts, she added.
On Sunday, the justice secretary said it was right for the courts to decide on what was in the 11-month-old’s best interests, adding that the government had no role to play in the case.
The lord chancellor, David Lidington, expressed sympathy with the judges involved in the "heartwrenching" case when asked whether it was right that judges could overrule the wishes of Charlie's parents.
Lidington said on Sky News’ Ridge On Sunday: “It is right that judges interpret the law, independently and dispassionately. As ministers and as a government we have no role to play in the Charlie Gard case, as would be the case in any other proceeding in court.”
He added: “I do not envy the judges who are having to take decisions on this. It must be incredibly pressured - probably emotional, under the judicial professionalism, a really emotional, heartwrenching case for them to have to decide.
“But they are independent, they know their duty is to decide the case on the basis of what they genuinely consider to be in the best interests of Charlie himself.
More than 375,000 people have signed a petition that asks the hospital to follow the wishes of Charlie’s parents, which was handed to doctors during the protest. It reads: “It is unacceptable that you have refused to follow the wishes of his parents and have instead decided to remove his life support, which will kill him.”
The children’s hospital previously won an order to say his life support should be turned off in a case that went all the way
to the European court of human rights
. They said his condition, caused by a rare mitochondrial disease, was irreversible and that further treatment could cause him suffering.
The degenerative genetic condition affects the cells responsible for energy production and respiration, leaving Charlie unable to move or breathe without a ventilator.
On Friday, it was announced that the hospital had applied to the high court for
a new hearing to decide whether Charlie should be given the experimental drug, as urged by doctors in the US and Rome.
Under a high court ruling, the hospital is forbidden from allowing Charlie to be transferred for nucleoside therapy anywhere. It also calls for Charlie’s artificial ventilation to be withdrawn, and for him to receive palliative care only.
The fresh court battle was welcomed by the family.
Ms Yates said on Friday: “We are quite happy with this outcome and we are hopeful and confident that Charlie may get his chance now.”
The Guardian