Doctors refuse to let the parents of Charlie Gard take him home to die
Source: Youtube / Charlie's Fight
Charlie Gard's parents have been given more time to say goodbye to their son, MailOnline can exclusively reveal.
Doctors at Great Ormond Street were planning to withdraw life support for the ten-month-old today but have changed their minds at the 11th hour.
Connie Yates and Chris Gard yesterday accused their son's doctors of "rushing" them and preventing all their family saying goodbye this weekend in a video message for their thousands of supporters, reports Daily Mail.
Miss Yates said today: "We have been in talks today with Great Ormond Street and they have agreed to give us a little bit more time with Charlie.
"We are really grateful for all the support from the public at this extremely difficult time.
The couple's "final wish" for Charlie has been blocked and his mother Connie said in a video for MailOnline: "We promised our little boy every single day that we would take him home."
Mr Gard added: "We want to give him a bath at home, put him in a cot which he has never slept in but we are now being denied that. We know what day our son is going to die but don't get a say in how that will happen."
They have also released a heartbreaking photograph of them lying with Charlie between them and said they were "spending our last precious hours with our baby boy."
And they also the so-called "Charlie's Army" who donated £1.4million ($2.5M NZD) for the US treatment being denied to him and told them: "Charlie will die tomorrow knowing that he was loved by thousands - thank you to everyone for all your support."
Charlie Gard in Great Ormond Street hospital, London. Photo / Facebook
The couple have also accused Great Ormond Street of trying to "rush" his death despite promises they would have the time they needed to say goodbye to their only son.
A family friend said it is understood Charlie's life support will now not be switched off today - and they may have the weekend.
"It seems the video Connie and Chris released yesterday made the hospital reconsider", the source.
"After everything the family have been through they deserve this. To be able to prepare properly to let Charlie go has already given the parents much comfort."
Members of Charlie Gard's army of supporters across the globe have expressed their grief as his parents prepare for his life support to be turned off today.
People all over the world have been using the hashtag #JeSuisCharlieGard' to celebrate the ten-month-old's life before it is ended by his doctors later.
Connie Yates and Chris Gard are at their son's bedside in Great Ormond Street Hospital today as he enters his final hours.
But they continue to receive unwavering support from thousands who donated £1.4million ($2.5M NZD) towards the treatment denied to him.
His parents are believed to be Catholic and their unwell son was photographed recently clutching a St Jude pendant - the patron saint of lost causes.
As a result his plight has had mass press coverage in Italy and even reached the Vatican where Pope Francis was asked to pray for Charlie.
Archbishop Vincenzo Paglia, head of the Pope's Pontifical Academy for Life was quoted as saying: "We should never act with the deliberate intention to end a human life, including the removal of nutrition and hydration, so that death might be achieved."
— Connie Yates #charliegard #charlieslaw (@connie85yates) January 30, 2017
Catholic groups across called the decision to end Charlie's care "heartbreaking" and "draconian" with vigils held for the little British boy in various Italian cities last night.
And in Britain others have taken to Twitter to vent their anger at Great Ormond Street with some promising to end their charitable donations over their treatment of Charlie.
Connie Yates and Chris Gard had battled to take their son, who has a rare genetic condition, to undergo experimental treatment in the US.
But earlier this week they reached the very end of their legal battle after the European Court of Human Rights backed British doctors who said it would be kinder to let the ten month old die.
In a heartbreaking video taken in the hospital room where they have lived since their son was admitted to hospital last year, the couple open their hearts speaking for the first time since they were told the European Court verdict.
Ms Yates said: "We've been talking about what palliative care meant. One option was to let Charlie go home to die. We chose to take Charlie home to die. That is our last wish. We promised our little boy every single day that we would take him home."
His father Chris, 32, said: "Our parental rights have been stripped away. We can't even take our own son home to die. We've been denied that. Our final wish if it all went against us can we take our little boy home to die and we are not allowed.
Charlie Gard with his mum Connie Yates. Photo / Facebook
The couple, who have previously lost battles in the High Court, Court of Appeal and Supreme Court, claim they also asked doctors to allow them a final weekend with Charlie.
"We begged them to give us the weekend," Ms Yates said, "Friends and family wanted to come and see Charlie for the last time. But now there isn't even time for that. Doctors said they would not rush to turn off his ventilator but we are being rushed.
"Not only are we not allowed to take our son to an expert hospital to save his life, we also can't choose how or when our son dies."
The couple say they also offered to pay privately for their son to be transported on a mobile ventilator to their flat in Bedfond, southwest London, in order to spend a few last precious hours with him.
But Connie said: "Even though we offered to pay for him to be transported back home, doctors have now told us he must die in hospital. We offered to pay for transport privately but that's not an option."
A spokesperson for Great Ormond Street Hospital said: "As with all of our patients, we are not able to and nor will we discuss these specific details of care. This is a very distressing situation for Charlie's parents and all the staff involved and our focus remains with them."
Charlie, who was born on August 4 last year - described by his parents as the "best day of their lives"- is one of only 16 cases known to have a type of mitochondrial depletion condition.
The condition saps energy from the organs and muscles leaving his lungs so weak he can only breath with a ventilator.
While he was born healthy, at eight weeks his mother noticed he was floppier than friend's babies.
After taking him to hospital, Charlie's condition quickly deteriorated and he has been on a ventilator at Great Ormond St Hospital ever since.
Doctors told the couple there was nothing more they could do for Charlie, who they said had irreversible brain damage and could not see, hear or move.
But his parents said they did not believe Charlie had the extensive brain damage doctors said as he could open his eyes and he knew is parents were there.
They found an eminent doctor in the US willing to try nucleoside therapy raising £1.3million ($2.3M NZD) to pay for it.
Outside Great Ormond Street members of "Charlie's Army" - the group who raised £1.3million ($2.3M NZD) for US care denied to him - have tied messages of hope, ribbons and posters to trees.
Mother and father of Charlie Gard, Connie Yates and Chris Gard, leave the Royal Courts of Justice on April 3, 2017. Photo / Getty Images
A hospital spokesman said this week the European Court decision marked "the end" of a "difficult process". But she said there would be "no rush" to change Charlie's care.
She said there would be "careful planning and discussion". "Our thoughts are with Charlie's parents," she added.
"(The) decision by the European Court of Human Rights marks the end of what has been a very difficult process and our priority is to provide every possible support to Charlie's parents as we prepare for the next steps.
"There will be no rush by Great Ormond Street Hospital to change Charlie's care and any future treatment plans will involve careful planning and discussion."
His "heartbroken" parents have reached "the very end of their journey" in their legal fight, a friend said.
His parents had battled to be allowed to take him to America to undergo experimental therapy, but successive courts ruled in favour of Charlie's British doctors.
The European Court of Human Rights dashed their final hope, and a friend of the family told the Mail: "Connie and Chris are absolutely distraught, utterly heartbroken. It has ripped their world apart. The agony they have gone through is unimaginable.
"Fortunately they have huge support from a very loving and close family but losing a child is every parent's nightmare. And for them the agony is more unbearable as they have fought so very hard for treatment they firmly believed would save Charlie's life."
Miss Yates, 31, and Mr Gard, 32, of Bedfont, South West London, have previously lost battles in the High Court, Court of Appeal and Supreme Court.
The condition saps energy from organs and muscles, and his lungs are too weak to function without the ventilator.
He is in intensive care at Great Ormond Street where doctors believe nothing can save him, despite his parents finding a US specialist willing to try an experimental drug treatment.
The Supreme Court backed the High Court and Court of Appeal which had both accepted evidence that it would be "futile" for Charlie to have further treatment because he has irreversible brain damage and cannot see, hear or move.
His parents are adamant he is growing stronger and showing signs of improvement. They have raised £1.3 million from well-wishers who donated via an online fundraising page to fund the US treatment. It is unclear what will happen to the money.
Well-wishers are continuing to donate to a fund set up by a couple who want to take their terminally ill baby son to the United States for treatment even though hopes have been dashed.
The couple have raised nearly £1.4 million, after launching an appeal to pay for treatment in American on a GoFundMe website four months ago, and more than £300 has been donated since Strasbourg judges announced their decision.
Doctors told the couple there was nothing more they could do for Charlie, who they said had irreversible brain damage and could not see, hear or move. Photo / AP
August 4, 2016 Charlie Gard was born a "perfectly healthy" baby.
September 2016 At just eight weeks old, he was diagnosed with a rare genetic condition after he began to lose weight.
He became only the 16th person in the world to be diagnosed with mitochondrial DNA depletion syndrome. The condition causes progressive muscle weakness and brain damage.
January 2017 Charlie's mother finds an American doctor who is willing to offer her son a trial therapy.
She set up a crowdfunding page to raise money for the treatment, called nucleoside.
April 2, 2017 His parents set themselves a target of £1.2million the day before a High Court hearing into Charlie's case began.
The money they raised - which was thanks to donations from around the world, including from celebrities - was enough for Charlie to travel by air ambulance and to cover the cost of the experimental treatment.
April 3, 2017 A judge in the High Court started to consider whether the baby's life support machines should be turned off.
The judge also considered whether his parents should be allowed to take him to America for the treatment.
April 11, 2017 A High Court judge ruled that doctors at Great Ormond Street are permitted to turn of his life-support machines.
His mother screamed "no" when the verdict was announced and the couple later descried themselves as 'devastated' and vowed to appeal the decision.
April 22, 2017 More than 110,000 people signed a petition which urged people to write letters calling on the Prime Minister to release him from hospital.
May 25, 2017 Three judges at the Court of Appeal upheld the High Court's ruling that Charlie's life support treatment should end.
June 8, 2017 Three Supreme Court justices rejected a fresh challenge by Charlie's parents and his mother said: "How can they do this to us?"
Doctors at Great Ormond Street were told to keep his life support on for another day so the European Court of Human Rights could consider his case.
June 13, 2017 Judges in Strasbourg, France, said the life support should be kept on until Monday June 19.
June 27, 2017 Judges in the European Court of Human Rights rejected a plea from the parents of terminally-ill baby Charlie Gard to intervene in the case.
June 30, 2017 Charlie's life support was set to be withdrawn - but in the hospital not at home as his parents wished - but doctors delayed it at the 11th hour.
Charlie's bereft mother indicated donations will be used to save lives of other children
'We know what day our son is going to die but don't get a say in how that will happen'. Photo / Facebook
Connie Yates, 31, has indicated that the £1.3m raised for Charlie will be used to save other children and a foundation could be set up in his name.
Miss Yates said in April: "A few people have asked us what we'll do if we don't win the court case.
"We have thought long and hard about it and we would set up a charity for mitochondrial depletion syndromes (there are others that are more common than Charlie's specific gene)", she said in a statement which was posted on the website but has now been taken down.
"We'd like to save other babies and children because these medications have been proven to work and we honestly have so much belief in them.
"If Charlie doesn't get this chance, we will make sure that other innocent babies and children will be saved.
"We would like some of it to go to research at the specific hospital that is willing to treat Charlie, and the rest will be available to help other families to get the medication that their children desperately need.
