Doctors Denied Request To Take Charlie Home Before They Turn Off His Life Support Later Today
The heartbroken parents of Charlie Gard’s have been denied permission to spend their last night at home with their son before his life support machine is switched off on Friday.
Chris Gard and Connie Yates, both in their 30s from Bedfont, west London, wanted 10-month-old Charlie, who suffers from a rare genetic condition and has brain damage, to be allowed to die at home.
The parents claimed that Great Ormond Street Hospital (GOSH) has denied them this request and the baby’s life-support will be switched off on Friday.
Yesterday, 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.’
Both the parents have shared a heartbreaking photograph of them lying with Charlie between them and said they were ‘spending our last precious hours with our baby boy’.
Even the money £1.4 million donated by ‘Charlie’s Army’ 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’.
Parents of the little boy have claimed that the hospital 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.
Both the parents have struggled a lot to take their dieing son to the US for the treatment who has a rare genetic condition.
But all their hopes were shattered when 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.
‘They even said no to a hospice.’
Previously, the couple has lost the battle in the High Court, Court of Appeal and Supreme Court. They claimed that they has asked doctors to allow them a final weekend with Charlie but say this request has been denied.
‘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.’
So that they can spend time with their son in their own house the couple even offered to pay privately for their son to be transported on a mobile ventilator to their flat in Bedfond, southwest London.
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.’
Last year on August 4 Charlie was born and his parents described it 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.
When he was born he was healthy, but eight weeks later his mother noticed he was floppier than friend’s babies.
Ever since from that day Charlie’s has been on a ventilator at Great Ormond St Hospital.
His condition was so bad that even the doctors told his parents that they could not do anything for Charlie, who they said had irreversible brain damage and could not see, hear or move.
But the parents didn’t believe the doctors 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 to pay for it.
Outside Great Ormond Street members of ‘Charlie’s Army’ – the group who raised £1.3million for US care denied to him – have tied messages of hope, ribbons and posters to trees.
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.’
Charlie’s bereft mother indicated donations will be used to save lives of other children
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.
‘We hope that you can all support us in making treatments available so that nobody else ever has to go through what we have.’
GoFundMe said officials would also have discussions with Charlie’s parents about what would happen to money raised for treatment.
One of their friend said that his ‘heartbroken’ parents have reached ‘the very end of their journey’ in their legal fight.
Both the parents fought a long battle for their kid so that they can 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.’
August 4, 2016
Charlie Gard was born a ‘perfectly healthy’ baby.
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.
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 is set to be withdrawn – but in the hospital not at home as his parents wished