Charlie Gard’s parents beg judges to let sick tot have ‘miracle’ treatment ahead of crunch High Court hearing – as 350,000 supporters sign petition
THE defiant parents of stricken Charlie Gard begged judges for him to be given “miracle” treatment - insisting “we don’t want him in the ground, we want him riding a bike”.
Connie Yates and Chris Gard spoke ahead of a High Court hearing at 2pm today into new information on the tragic case after delivering a 350,000 signature petition to Great Ormond Street Hospital.
The parents said there was nothing to lose in giving little Charlie one last chance of life - and hailed the nucleoside bypass therapy as a potential miracle cure for the youngster's rare brain condition.
The petition called for the family to be allowed to travel to receive the experimental treatment, something currently blocked by a High Court ruling.
Connie, 31, 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 said that when the same medicine was given to a little girl in Spain in a similar condition to Charlie, it achieved remarkable results.
The mum told The Sun: “This medication has up to 10 per cent chance of working for Charlie.
“There’s 18 children currently on this medication, they’re all getting stronger, they’re all getting better. It’s a miracle what happens.
“One girl was on a ventilator and a year later she was riding a bike.
“We’ve got those pictures, it’s very hard for us to see a child who was the same as Charlie and a year later riding a bike.
“We don't want him to be in the ground, we want him to be riding a bike.”
Dad Chris, 33, added: “We’re not strong people, but what is strong is the love for our little boy. He’s kept us going through all this.”
Pope is no help, says prof
COMMENTS on the Charlie Gard case by figures such as the Pope and Donald Trump are “unhelpful”, an expert has claimed.
Prof Neena Modi said only a limited number of people know the details of Charlie’s condition.
The Vatican and the US President tweeted support for parents Connie Yates and Chris Gard as hospitals in Rome and the US offered to take Charlie in.
But Prof Modi, president of the Royal College of Paediatrics and Child Health, said the UK had a “compassionate framework” for life-or-death decisions.
In an open letter she said: “Doctor-patient confidentiality means only the family, doctors and legal teams know his situation.
“This is why interventions by agencies or individuals, however well-intended, are unhelpful.”
Prof Modi said decisions to withdraw life support “aren’t made lightly”.
She added: “Amidst the sea of opinions, the public deserves to know how such decisions are made.”
— BEN LEO
He insisted that the “miracle” medication could cure his baby boy.
“Everyone is very negative about what this medicine can achieve and if it can work,” he told The Sun.
“No one knows what it can achieve - it could perform miracles.
“But if it doesn’t work then we will let him go.”
It came as they joined members of 'Charlie's Army' to hand over a petition to Great Ormond Street vowing: "If he's still fighting, we're still fighting".
His defiant parents thanked everyone those who have supported them during their long legal battle as they said the ten per cent chance of treatment working "is a chance worth taking".
The emotional pair added: "He's our flesh and blood, we feel it's our right as parents to decide if we should give him a chance at life.
They were joined by Reverend Patrick Mahoney, who prayed with Charlie and his parents at the stricken tot's bedside.
It comes after they vowed the fight was "not over" after little Charlie, who suffers from mitochondrial depletion syndrome, was given a last minute reprieve.
'IT WILL SIGNIFICANTLY HELP CHARLIE'
Catherine Glenn-Foster, chief executive of Americans United for Life, has helped Charlie's parents with medical and legal questions.
She said: "This is very, very promising because it means that baby Charlie has a chance. It doesn't mean that it's a done deal but it does give him a chance, it gives him a few more days and it means that the court can in fact rule that the hospital does not have the right after all to remove his ventilator, his feeding tube and should in fact be transferring him to another hospital to receive this cutting edge therapy or in fact even provide it right here.
"This new evidence involves the therapy itself and the per cent success rate and the likelihood it will in fact significantly help Charlie.
"That's a success rate of up to ten per cent according to one of the doctors who has worked on this and 50 per cent plus success rate of the treatment crossing the blood brain barrier so a non-zero chance and that's what the parents are looking for - they're looking for that chance for their son.
"That's what so many other people have come out in support of - more than 350,000 signers of this one petition alone, other petitions tens of thousands as well, rallies on the streets, Pope Francis, President Trump, 37 European Parliamentarians, doctors around the world , hospitals and even celebrities."
Their support has been boosted in recent days after President Donald Trump threw his weight behind their lengthy battle to fly stricken Charlie to America for experimental treatment.
United States Congressmen Brad Wenstrup and Trent Franks announced a bid to make the tot a lawful US resident.
They said: "Despite Charlie’s heartbreaking condition, his parents have refused to give up hope.
"They have advocated for him fiercely. They have raised over £1 million to pay for their son to receive experimental treatment in the United States. They have kept fighting for his life."
Today Connie said the interest of the Pope and US President Donald Trump in Charlie's case has "saved his life so far.
Ms Yates told BBC Radio 4's Today programme: "Yeah, they have saved his life so far.
"It turned it into an international issue. There are a lot of people that are outraged by what is going on. We have got new evidence now so I hope the judge changes his mind."
But Justice Secretary David Lidington has since said the Government has no role to play in the case.
Mr Lidington told Sky News’ Ridge On Sunday: “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.”
Mr Lidington 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, heart-wrenching 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.”
Great Ormond Street Hospital has applied to the High Court for a fresh hearing over "claims of new evidence relating to potential treatment".
Connie said: “Today is the first hearing and there’ll be another later on the week.
“That’ll be the scary one or the day we get the result, so we’ve got to stay hopeful and hope that the judge listens to these seven experts we have now who say this has a chance of working for Charlie.
“They all agree that he should have this opportunity, we agree he should have this opportunity and all our supporters do as well, I just hope we get this chance.”
Speaking today a defiant Connie told the BBC: "I wouldn't be able to sit there and watch my son suffer and be in pain.
"He still gets enjoyment, he doesn’t get the best life at the moment, he's stuck in a bed.
"We could take him to the park. His pulse is nice and settled, he wakes up, he enjoys his tickles, he watches videos on the iPad.
"If he was suffering, I couldn’t do it, I promise.
"We are in a living hell to be honest. We are living on a knife edge."
She spoke about the case of Ashya King who was taken from hospital in 2014 by his parents to get life-saving treatment in Prague.
Connie added: "This is like the King’s story. That treatment wasn’t available from the NHS
They took their son out of the country. They ended up getting their son the treatment, and it worked.
"He is now at school and that treatment is now coming to the NHS.
"Sometimes parents are right in what they think."
The family tweeted a message of hope to their growing army of supporters following news of the breakthrough.
"A HUGE thank you to all you out there supporting and sharing Charlie's story!" they said.
"Please keep going! The fight is not over!!!!"
The children's hospital revealed on Friday it had been contacted by two international hospitals claiming to have "fresh evidence about their proposed experimental treatment" for little Charlie.
Charlie's mum Connie Yates said: "We're hopeful and confident that Charlie may get his chance now."
High Court listings show a hearing is due to take place at 2pm on Monday with Mr Justice Francis.
Therapy 'can fix' his DNA
What is the treatment?
Nucleoside bypass therapy is a new treatment that is taken as an oral medication.
How does it work?
It could theoretically have repaired Charlie’s mitochondrial DNA and help it synthesise again by giving him the naturally occurring compounds his body isn’t able to produce.
Has it been used to treat anyone with Charlie’s condition before?
A US expert said 18 people have been treated with nucleoside bypass therapy. But he added that none of them were in a condition as severe as Charlie’s.
Why don’t UK doctors want Charlie to have the treatment?
GOSH said nucleoside therapy is not intended to be a cure and would not improve Charlie’s quality of life.
On Friday the hospital applied to the High Court for a new hearing this week to decide whether Charlie should be given the experimental drug.
Great Ormond Street said its view that treatment would be "futile" had not changed, but it believed it was right to seek the view of the High Court.
The defiant pair vowed to fight until the "bitter end" to save Charlie and took their case all the way to European Court of Human Rights in Strasbourg in France.
But they were dealt the devastating blow that the ECHR had rejected their plea to intervene in the case and endorsed the position of Britain's courts.
The couple has constantly challenged doctors who say their little boy has irreversible brain damage and should be given palliative care.
Medics at Great Ormond Street Hospital say the tot should be allowed to die with dignity.
But Connie and Chris argue their son should be given a chance and travel to the US for experimental medical treatment.
They have also slammed the hospital, saying their boy is a “prisoner” and GOSH’s treatment has been “inhuman”.
The hospital has promised to provide "every possible support" to the couple and say they are in "no rush" to change Charlie's care.
Celebrities including Michelle Keegan, Katie Price and Charlotte Crosby have joined the campaign to try to save little Charlie.