Charlie Gard’s mum says he won’t live to see his 1st birthday as parents END court battle to save son and blame Great Ormond St for not letting him fly to US for treatment
CHARLIE Gard's parents this afternoon ended their fight to try and save the tot's life as they admitted "time has run out".
In emotional scenes at the High Court, the barrister of Connie Yates and Chris Gard said the couple now accept the damage done to the 11-month-old's muscle and tissue is "irreversible" - and he would not live to see his first birthday.
The couple broke down in court as mum Connie told the judge: "We have always believed that Charlie deserved a chance at life."
But she hit out at not having been able to see the raw data of tests conducted on Charlie earlier in his life, saying her son had instead been judged as having "irreversible brain damage", with treatment "futile" when he could have benefited from treatment.
She said there had been too much "wasted time" as legal battles were fought.
She said: "Had Charlie been given the treatment sooner he would have had the potential to be a normal, healthy little boy.
"He may well have had some disabilities later on in life but his quality of life could have been improved greatly."
She said the parents had always listened to experts about what was possible for their son.
Charlie Gard's condition and his story so far
Charlie Gard is in the “terminal stages” of a disease called mitochondrial DNA depletion syndrome, after both of his parents were unknowingly carrying the faulty gene.
Sufferers of the condition do not get energy to their muscles, kidneys and brain, and is typically fatal in infancy and early childhood.
The 11-month-old is said to be one of only 16 people to have ever had the condition and his desperate mum and dad have been unable to find a treatment in the UK for him.
They raised £1.3million to send him America for treatment but doctors at Great Ormond Street Hospital said Charlie should be allowed to die in dignity and applied for permission to have his ventilator switched off.
The European Court of Human Rights’ ruled the doctors' decision would be upheld and his parents were not allowed to intervene in their child’s case.
The family were given extra time to say goodbye before his life support is turned off.
Now US President Donald Trump and the Pope have offered to help as "Charlie's Army" vocalised their support for him all over the world.
British doctors say their "hands are tied" and they are unable to let the tot fly to Italy, so the Italian foreign minister called for crisis talks with Boris Johnson - who backed the doctors' and courts' decision.
Theresa May also confirmed she supports Great Ormond Street’s decision not to let Charlie fly.
She was set to speak with Trump about the child's fate at the G20 summit in Hamburg, as his followers continued their support.
The Pope declared on July 6 he wanted to give the youngster a Vatican passport to help him travel to an Italian hospital for treatment, before a New York Hospital offered to admit him - and even ship experimental drugs to the UK.
On July 10 Charlie's parents went back to the High Court and asked for a fresh review.
Days later Dr Michio Hirano travel from New York on July 17 to examine the baby boy, but on July 21 doctors said the latest scans made for "sad reading".
GOSH chairwoman Mary MacLeod said doctors and nurses at the hospital had been subjected to abuse and threatenbing messages.
Finally Charlie's parents made the heartbreaking decision to let their boy go, and to stop their legal battle.
She said: "Now we will never know what would have happened if he got treatment but it's not about us. It's never been about us. It's about what's best for Charlie now.
"At the point in time when it has become too late for Charlie we have made the agonising decision to let him go."
Calling her son a "warrior", she tearfully added: "Mummy and Daddy love you so much Charlie, we always have, we always will. I'm so sorry that we couldn't save you."
The couple also thanked Great Ormond Street Hospital nurses and staff for keeping their son "comfortable and safe".
In Mr Justice Francis' full statement to the court he touched on the accusations made by some of Charlie's supporters that the NHS "has the power to decide" his fate, adding: "This is the antithesis of the truth. In this country children have rights independent of their parents.
"Almost all of the time parents make decisions about what is in the best interests of their children and so it should be.
"Just occasionally, however, there will be circumstances such as here where a hospital and parents are unable to decide what is in the best interests of a child who is a patient at that hospital.
"It is precisely because the hospital does not have power in respect of that child that this hospital makes an application to the court, to an independent judge, for a determination of what is in that child's best interests."
To drop the case is a devastating decision for the couple, who have dedicated five months to fighting for their son to travel to the US for pioneering treatment they hoped would save his life.
The case was dropped at the 11th hour with the tot now not expected to reach his first birthday next week on August 4.
A MOTHER'S TRIBUTE: Connie Yates reveals heartbreak at letting her son go
"The last 11 nearly 12 months have been the best, the worst and ultimately life changing months of our lives but Charlie is Charlie and we wouldn't change him for the world. All our efforts have been for him."
"There is one simple reason for Charlie's muscles deteriorating to the extent they are in now - TIME. A whole lot of wasted time. Had Charlie been given the treatment sooner he would have had the potential to be a normal, healthy little boy."
"Our poor boy has been left to just lie in hospital for months without any treatment whilst lengthy court battles have been fought. We have been told time and time again that Charlie has a 'progressive disease' but rather than allow treatment for him with a medication that was widely accepted to have no side effects, Charlie has been left with his illness to deteriorate, sadly, to the point of no return."
"Our son has an extremely rare disease for which there is no accepted cure but that does not mean that this treatment would not have worked, and it certainly does not mean that this shouldn't have been tried."
"We will have to live with the 'what if's' which will haunt us for the rest of our lives."
"Charlie had a real chance of getting better. It's now unfortunately too late for him but it's not too late for others with this horrible disease and other diseases."
"We are struggling to find any comfort or peace with all this, but one thing that does give us the slightest bit of comfort, is that we truly believe that Charlie may have been too special for this cruel world."
Their barrister Grant Armstrong told the court: "This case is now about time. Sadly time has run out."
He added: "It is now too late to treat Charlie."
Mr Armstrong said the couple felt that continuing their fight would cause Charlie pain, adding the case was "worthy of a Greek tragedy".
Mr Armstrong said Charlie Gard's parents had spent the weekend with their son, saying: "Dark days lie ahead for these parents.
"The parents wish to treasure their remaining time with Charlie, however short that may be."
Mr Justice Francis, who was also brought to tears during the hearing today, paid tribute to Chris and Connie, saying: "No parent could have done more for their child."
He said no one would be able to understand what Chris and Connie had gone through.
Katie Gollop QC, who is representing Great Ormond Street Hospital, told the court she was "more sorry than words could say".
A foundation is now expected to be set up in Charlie's name, aimed at supporting parents in a similar situation.
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On Friday a barrister representing Great Ormond Street Hospital doctors caring for the 11-month-old boy told Mr Gard and Ms Yates that a report on the latest scan made for ";sad reading".
In her statement, Connie outlined this is the turning point in their heartbreaking decision, saying: "We are truly devastated to say that following the most recent MRI scan of Charlie's muscles ... as Charlie's devoted and loving parents we have decided that it's no longer in Charlie's best interests to pursue treatment and we will let our son go and be with the angels."
Last week the American specialist, Michio Hirano, a professor of neurology at Columbia University Medical Centre in New York, travelled to London to examine Charlie for the first time and discuss the case with Great Ormond Street doctors.
Mr Gard and Ms Yates had been desperately pushing for their son Charlie, who suffers from a rare genetic condition and has brain damage, to be allowed to undergo a therapy trial in New York.
A section of Mr Justice Francis' statement
"From the outset of this second hearing, I made it clear that I could only change the decision that I made on 11 April on the basis of compelling new evidence.
"No one has sought to assert that this approach is incorrect, nor could they, given the detailed judgment that I gave in April, having considered all of the medical evidence, and the review of that judgment by the three layers of appeal to which I have already referred.I also made it clear that I could only consider the case on the basis of evidence and not on the basis of partially informed or ill-informed opinion, however eminent the source of that opinion.
"I made it clear that I would always listen carefully to any new and material evidence. The world of social media doubtless has very many benefits but one of its pitfalls, I suggest, is that when cases such as this go viral, the watching world feels entitled to express opinions, whether or not they are evidence-based.
"When I became a judge, I took the same oath that all judges in England and Wales take and I promised to do right to all manner of people after the laws and usages of this Realm. When jurors are sworn in in criminal trials they promise to try the case according to the evidence.
"I have at all times endeavoured to remain faithful to that oath, to apply the law having heard and considered the evidence.When Dr Hirano was kind enough to give up his time to give evidence by video link to this Court some two weeks ago, I invited him to travel to England to see Charlie and this is an invitation which he was good enough to take up, doubtless at extreme inconvenience to himself and, I daresay, to other patients of his.
"It seems to me to be a remarkably simple proposition that if a doctor is to give evidence to this court about the prospect of effective treatment in respect of a child whose future is being considered by the court, that Dr should see the patient before the court can sensibly rely upon his evidence.
"My task has always been to determine what is in Charlie's best interests, not what benefit there could be to scientific research."
Doctors at Great Ormond Street have continuously argued the therapy is experimental and will not help.
They had said life-support treatment should stop.
Charlie's parents, who are in their 30s and come from Bedfont, West London, have already lost battles in the High Court, Court of Appeal and Supreme Court in London.
They have also failed to persuade European Court of Human Rights judges to intervene.
But the couple had argued there was new evidence and asked 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.
Mr Justice Francis had told the couple that he will not re-run the case but will consider any ''new material''.
Great Ormond Street chairwoman Mary MacLeod said doctors and nurses have been subjected to abuse in the street and received thousands of threatening messages in recent weeks.
She said the hospital is in close contact with police.
The Bishops' Conference of England and Wales said in a statement: "Following today's decision by the parents of Charlie Gard, the Bishops of England and Wales express their deepest sympathy and compassion for them and for their son.
"It is some weeks now since Pope Francis said that he was following with affection and emotion the case of little Charlie Gard and expressed his own closeness to his parents.
"For them he prays, hoping that their desire to accompany and care for their own child to the end is not ignored.
"Indeed it is for Charlie, his parents and family that we all pray, hoping that they are able, as a family, to be given the support and the space to find peace in the days ahead."
Deidre's My View
BY DEIDRE SAUNDERS
ALL of us feel deeply for poor, tragic Connie Yates and Chris Gard, now having to accept they must say goodbye to their beloved Charlie.
They have fought so long and hard for him to enjoy real quality of life, and now time has run out for all of them.
Probably only those who have also lost a child can truly imagine the pain and despair confronting them now, but I hope that Connie and Chris can take a step back for a while from their battle, and find a quiet space in which to share their heartfelt pain.
The campaign for treatment for Charlie became very heated and bitter at times – which Connie and Chris deplored. Those who joined in vociferously with aims of their own should respect the parents’ need to grieve now.
When faced with such pain it can be tempting to look for someone to blame as a way of escaping the utter anguish of loss. Connie and Chris are talking of a charitable foundation to further the work for children with mitochondrial syndrome similar to Charlie’s and make his name live on, but that is for the future.
For now focus on saying goodbye to little Charlie, their brave warrior.
If you can identify with Connie and Charlie and are in or have been in a similar situation, you can find understanding through Child Bereavement UK (www.childbereavementuk.org, 0800 02 888 40).