Chris Gard and Connie Yates with their son Charlie Gard. Photo / Supplied
Chris Gard and Connie Yates with their son Charlie Gard. Photo / Supplied
Charlie Gard won a third dramatic reprieve last night.
Doctors bowed to global pressure to give the desperately ill baby another chance.
After being handed fresh evidence, Great Ormond Street Hospital yesterday asked the High Court to reopen the agonising case, reports Daily Mail.
The 11-month-old has twice survived plans to end his life support - last Friday and again this Monday.
Pope Francis and Donald Trump have declared their support and yesterday seven international scientists came to Charlie's rescue, urging his doctors to reconsider.
They are all experts in mitochondrial depletion syndrome, the incredibly rare genetic condition afflicting Charlie.
The courts have ruled there was no evidence a proposed experimental drug therapy would work. But the seven said: "There is substantial direct and indirect evidence."
Charlie's parents Connie Yates and Chris Gard said the new evidence gave him a much higher chance of survival than previously thought.
They spent yesterday begging Great Ormond Street to let their son try the treatment.
After meeting the couple, the hospital said in a statement last night that international researchers "have communicated to us as late as the last 24 hours that they have fresh evidence about their proposed experimental treatment".
It added: "We believe, in common with Charlie's parents, it is right to explore this evidence.
"Great Ormond Street Hospital is therefore giving the High Court the opportunity to objectively assess the claims of fresh evidence. It will be for the High Court to make its judgment on the facts."
The little boy's supporters - dubbed "Charlie's Army" - went wild with jubilation on social media. A family spokesman said the extraordinary move "marked the end of an extremely traumatic and distressing week for his parents and the rest of his family".
She added: "Connie and Chris are like any loving parents. They have always put Charlie's needs first and will continue to do so as they only want the very best for him.
"They are optimistic their son will soon get the treatment he needs and want to thank those people from around the world who have sent them so many moving and touching messages of support."
Charlie is only the 16th sufferer worldwide of his rare type of mitochondrial disease, which saps energy from his muscles and organs and means his lungs are too weak to function alone.
Doctors say he is deaf, blind, brain damaged, in pain and beyond hope, and four courts have now ruled his "best interests" are served by life-support being removed and him "dying with dignity".
After an American specialist offered to treat Charlie with experimental nucleosides therapy, British doctors told the High Court it would not work because the drug would not be able to breach what is known as the "blood brain barrier" to treat malfunctioning cells.
But the seven experts wrote in their letter to Great Ormond Street: "In fact, there is substantial direct and indirect evidence clearly demonstrating that [the drugs] cross the blood brain barrier."
Miss Yates said yesterday: "There is potential for him to be a completely normal boy, but we don't know, as you just don't know until you try. There's around a 10 per cent chance of this working for Charlie." She did not explain how she had arrived at that estimate.
She told Good Morning Britain: "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.
"I promise everyone I would not sit there and watch my son in pain and suffering, I couldn't do it.
"Suicide and euthanasia are both illegal in this country, how can ending Charlie's life be legal when there's a chance? It is in his best interests to be given a chance to live."
The seven specialists include the American doctor offering to treat Charlie, and a colleague, neither of whom can be named for legal reasons.
Two others are from the papal children's hospital in Rome, two are from the Vall d'Hebron research institute in Barcelona, and the seventh is an award-winning clinical geneticist at Cambridge University.
The experts, who all put their names to the letter, urged Great Ormond Street: "In light of this important new information... reconsideration of treatment for Charlie Gard is respectfully advocated."
The High Court, Court of Appeal, Supreme Court and European Court of Human Rights have all backed Great Ormond Street's right to withdraw Charlie's breathing tube.
The Great Ormond Street statement said: "Charlie's condition is exceptionally rare, with catastrophic and irreversible brain damage. Our doctors have explored every medical treatment, including experimental nucleoside therapies. Independent medical experts agreed with our clinical team that this treatment would be unjustified.
The 11-month-old has twice survived plans to end his life support - last Friday and again this Monday. Photo / AP
"Not only that, but they said it would be futile and would prolong Charlie's suffering. This is not an issue about money or resources, but absolutely about what is right for Charlie.
"Our view has not changed. We believe it is right to seek the High Court's view in light of the claimed new evidence."
Earlier this week, the Pope called for mercy for Charlie, and his hospital offered treatment.
President Trump tweeted that he would be "delighted" to help, and the American doctor and hospital also offered to treat Charlie for free - or even to send the experimental drugs to Britain.
But Great Ormond Street said it was "bound by the ruling of the High Court, which expressly forbids us from transferring Charlie for nucleoside therapy anywhere".
It said: "We endeavour to provide the best possible medical care for every single child we treat. We are proud of our colleagues, and proud of the work that they do.
"We are also immensely proud of the public support we have earned over the generations. We respect it greatly and know how precious it is.
"The very last thing we want is for a patient to suffer, and our devoted medical teams do their very best day in, day out, for the children under their care.
"We respectfully acknowledge the offers of help from the White House, the Vatican and our colleagues in Italy, the United States and beyond.
"We would like to reassure everyone that Great Ormond Hospital will continue to care for Charlie and his family with the utmost respect and dignity through this very difficult time."
The High Court is likely to regard the new application as urgent, and it could be heard on Monday.
'I think this treatment could work' says chemist who backed letter to GOSH
Ramon Marti is a chemist and the head of the Neuromuscular and Mitochondrial Pathology group at the Vall d'Hebron Research Institute, a public sector institution that promotes and develops innovative biomedical research at Barcelona's Vall d'Hebron Hospital.
Yolanda Camara is a biologist working in the area of Neuromuscular and Mitochrondial Pathology.
Mr Marti confirmed today: "We are co-signatories on a scientific statement sent to the Great Ormond Street Hospital.
"As experts we're asked for an opinion and we give it but there's nothing else I really want to say.
"I, and I'm speaking now on a personal level, have sent this statement saying that as an expert I think this treatment could work but I'm not getting involved in the final decision because that depends on other factors I do not know about.
"I haven't seen Charlie and I'm a chemist, not a doctor. The letter says what it says and I can confirm that I signed the letter and I signed it because I felt I had to send it.
"Before I also sent a letter to Charlie's mother, signed solely by me, with basically the same message for her in case she wanted to use it through her lawyers for the trial.
"I don't remember exactly when it was sent but it was earlier this year when the trial was happening.
"The message in it was similar in that it said that in this type of illness, this type of treatment could have some kind of effect but of course I didn't offer an opinion about what should happen to Charlie above and beyond what those who know the case might conclude.
"Charlie's mum has that letter if she wants to share it with the press.
"Those have been my only two interventions in this case. I can't say that I recommend one thing or the other.
"What I can tell you is that I've sent information to the hospital. I don't know how that information has become public."
Asked if he and Yolanda had sent the letter unsolicited, he added: "No, we have had contact amongst ourselves as experts and we have had interaction with other actors who I'm not going to identify and we've decided to do this."
So is Charlie's brain already too damaged to help?
If Charlie's brain is already damaged, this could not be reversed, even if the syndrome itself were made better.
Even the US doctor offering the treatment agrees the proposed therapy could not undo this. Great Ormond Street says Charlie has "irreversible brain damage".
But his parents are adamant this is not the case. They say they know him best and he responds to them.
Supporters of the family have been using social media to share two of Charlie's hospital brain scans, which indicate it is "normal". But while the scans are genuine, they are dated October 19, 2016, and January 6 this year.
The London medics say at that point they were willing to try the American therapy themselves, but then Charlie began suffering repeated brain seizures.
These went on from January 9 or 10 to January 27, during which time the doctors believe structural damage was caused to his brain.
One of them described in court how Charlie was not brain dead, but "persistently encephalopathic" - in other words, tests showed no usual signs of normal brain functions such as responsiveness, interaction or crying.
But Charlie's parents insist he does move in meaningful ways, and reject the diagnosis of brain damage.
On this basis, they say the American therapy is worth a try.
One of Charlie's doctors told the High Court: "He's blind, he's deaf, he can't breathe. This situation is not a tolerable one to leave a child in."
And what's the truth about the experimental drug?
The "fresh evidence" which has sent the case back to court involves a debate about whether the therapy can successfully reach Charlie's brain.
Called nucleoside bypass therapy, the treatment involves a drug that replaces deoxynucleosides, which are naturally produced in healthy people, to repair DNA. But for it to work, the drug would need to penetrate a biological membrane known as the "blood brain barrier".
This barrier separates blood circulating the body from the brain's fluids. For the medication to fix cells in the brain - as well in the rest of the body - it needs to cross the barrier.
The High Court was told there was "no evidence" the therapy could cross the blood brain barrier, and the judge adopted this position in his ruling.
But the new evidence challenges this. In their letter, the seven experts said there was "substantial direct and indirect evidence clearly demonstrating" that the drug can cross the barrier.
If it can, experts believe there is a small chance it could make Charlie better. The US doctor did tell the court in March he believed his experimental drug could cross the blood brain barrier - but his was a lone voice.
If the judge had heard all seven voices saying the same, it raises the question of whether he would have ruled there was "no evidence" the drug would work on someone with Charlie's condition.
