Eleven-month-old Charlie Gard, who suffered from mitochondrial DNA depletion syndrome, passed away on Friday, just a week before his first birthday.
His mother announced that “Our beautiful little boy has gone, we are so proud of you Charlie.”
His parents Connie Yates and Chris Gard, spent almost a year fighting in the courts to save Charlie’s life.
They raised over $1 million to bring him to America to attempt a trial treatment for his syndrome, but the courts said no and agreed with the hospital that they should remove Charlie from life support.
Charlie could not breathe on his own.
In late June, the European Court of Human Rights caused international outrage when the judges decided to side with British courts to remove life support for 10-month-old Charlie Gard, refusing to allow his parents to take him to America for trial therapy.
“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 bewith the angels,” Yates said in court.
Hospital lawyers had told the parents a few days before that Charlie’s latest latest test results were not good:
Great Ormond Street Hospital lawyer Katie Gollop broke the bad news to Charlie’s parents at a pre-court hearing Friday in London.
Charlie’s father, Chris Gard, yelled “Evil!” at Gollop as his mother, Connie Yates, began to cry. The parents said at the hearing it was the first time they were being told about the latest results in the crucial test of Charlie’s brain function.
The test results infuriated the parents because they believe if they had been able to give Charlie treatment the results would have shown something different. From The Daily Mail:
They are furious because when they began fighting for Charlie to have the experimental therapy, he was not brain-damaged, according to a family source.
‘The sad fact is the scans taken before the court hearing in April did not show irreversible brain damage. This is why the parents fought so hard. They should have been trusted,’ the source said.
‘If anyone thinks the parents were deluded, and simply could not accept the diagnosis, they are wrong. Charlie was not a hopeless case. There was no brain damage. He should have been treated.
‘As the court heard, he was a relatively normal little boy.’
Charlie’s mother Connie hinted at this as she delivered her statement:
“Had Charlie been given the treatment sooner he would have had the potential to be a normal, healthy little boy,” Yates said, referencing the recent medical test that ultimately led to the couple’s decision to withdraw.
“I only wanted to give him a chance at life,” Yates said. “We will always know in our hearts that we did the very best for Charlie and I hope that he is proud of us for fighting his corner.”
“There has never been any proof that he was and we still don’t think that he’s in pain or suffering to this day,” Yates said in court on Monday.
“Having said that, we have decided to let our son go and that’s for one reason and one reason only. It is because the prospect of improvement is unfortunately now too low for Charlie,” she added.
The courts and hospital kept giving Yates and Gard bad news by saying that they cannot respect their wishes and allow Charlie to die at home. Instead they moved him to a hospice.
It doesn’t end there. Yates and Gard wanted Charlie to remain on a ventilator for a least a week, but the courts said no:
His mother Connie has hit back and insists they have ‘denied us our final wish’.
She said: ‘We just want some peace with our son, no hospital, no lawyers, no courts, no media – just quality time with Charlie away from everything to say goodbye to him in the most loving way.
‘Most people won’t ever have to go through what we have been through, we’ve had no control over our son’s life and no control over our son’s death.
‘I’m shocked that after all we’ve been through, they won’t allow us this extra time.’
On Wednesday Mr Justice Francis sided with his doctors and said Charlie would be taken to the hospice in a secret location where doctors will stop life-support treatment shortly after he arrives because they say extending his life will only cause him more pain.
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