Friday, April 28, 2017

A barrister representing doctors at Great Ormond Street Hospital gave some detail of the little boy's difficulties. Katie Gollop QC said Charlie could not cry and was deaf. She said doctors thought that a withdrawal of life support treatment would be in Charlie's best interests and told the judge: "The hospital's position is that every day that passes is a day that is not in the child's best interests." Ms Gollop said Great Ormond Street specialists had considered the type of treatment Charlie's parents wanted him to have in America and decided against it. Barrister Sophia Roper, who represented Charlie's parents, told the judge: "His parents believe that he is in much better shape than the hospital does."

Why are parental rights overruled? If this child has a tiny chance at life or extension of life why not give him this chance?
The system is designed for efficiency. But what about the child? Is it in the best interests of the child to be denied a possible life extending treatment that won't cost the system any thing because these parents have raised the money themselves for the treatment with a GoFundMe campaign?
Why is the system so obdurate and why does it fail families?
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http://www.getwestlondon.co.uk/news/west-london-news/charlie-gard-huge-27000-anonymous-12952638

LIFE OR DEATH

Charlie Gard’s mum breaks down at High Court while clutching son’s cuddly toy as US doctor offering £1.2m treatment admits he’s ‘less enthusiastic’ after judge hears of ‘vanishingly small’ chance to save terminal tot

Mr Justice Francis has been hearing evidence in the case of eight-month-old Charlie Gard at London's High Court
By Gemma Mullin
3rd April 2017, 9:19 am
Updated: 5th April 2017, 2:59 pm
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COMMENTS
THE MUM of a baby suffering from a rare genetic condition broke down at the High Court today as a doctor offering the ill tot therapy admitted he’s “less enthusiastic” after hearing of the “vanishingly small” chance to save him.
Connie Yates wept as the American neurologist, who said he’d carry out the £1.2million treatment for her almost eight-month-old son Charlie Gard, told a judge “he certainly will die without treatment”.
The parents of almost eight-month-old Charlie Gard, pictured, want to take him to the US for pioneering treatment
PA:PRESS ASSOCIATION
The parents of almost eight-month-old Charlie Gard, pictured, want to take him to the US for pioneering treatment
Connie Yates, far right, arrives at the High Court with her partner and Charlie's dad Chris Gard, far left
LONDON NEWS PICTURES
Connie Yates, far right, arrives at the High Court with her partner and Charlie’s dad Chris Gard, far left
Charlies parents want to take him to the USA for pioneering treatment
GETTY IMAGES
Charlies parents want to take him to the USA for pioneering treatment
Dad Chris wore carried his son’s teddy monkey with him to the hearing
LONDON NEWS PICTURES
Dad Chris wore carried his son’s teddy monkey with him to the hearing
The expert, who cannot be identified, told Mr Justice Francis via telephone link from the US that the tot was “in the terminal stages of illness” and admitted he did not previously realise how severely ill Charlie was.
He added that 18 people had been treated with nucleoside bypass therapy – though none of them were in such a severe condition – and conceded that Charlie’s therapy was “clearly unchartered territory because no one has done this”.
Charlie’s mum broke down in the hearing, when told how ill her son was
PA:PRESS ASSOCIATION
Charlie’s mum broke down in the hearing, when told how ill her son was
Connie Yates said that the family desperately wanted their boy's life to be saved
FEATURESWORLD
Connie Yates said that the family desperately wanted their boy’s life to be saved
Doctors at Great Ormond Street Hospital, where Charlie is currently in intensive care, say he should be allowed to die in dignity and applied to the court for permission to switch off his ventilator.
A specialist in paediatric medicine at the world famous hospital told the judge that Charlie was “extremely unwell” and likely to be feeling pain.
She said there was a ” very small” theoretical chance that treatment would result in any improvement.
The specialist said that possible benefit was outweighed by the continued suffering Charlie would endure.
“Charlie is suffering and that outweighs the small theoretical chance that this may be effective treatment,” she said.
Mr Justice Francis will have to decide whether to allow little Charlie to live or whether doctors should switch off his life support machine.
gardgard
LONDON NEWS PICTURES
Connie Yates … mum wept as she was told her son will ‘certainly die without treatment’
gard
LONDON NEWS PICTURES
Chris Gard … dad held onto his son’s toy monkey throughout court proceedings

The High Court judge, analysing evidence in front of the packed courtroom today, described the issue as “dire” and praised barrister Sophia Roper for representing Charlie’s parents for free.
The youngster’s dad Chris Gard, from Bedfont, west London, clutched his son’s toy monkey throughout as the court heard both parents were “utterly devoted to Charlie and have worked hard to become experts in this disease”.
Mr Gard was later seen leaving the High Court clutching the monkey cuddly toy, and later with the memento tucked into his suit jacket pocket.
Parents Connie Yates and Chris Gard are embroiled in a High Court dispute over the future of their baby
PA:PRESS ASSOCIATION
Parents Connie Yates and Chris Gard are embroiled in a High Court dispute over the future of their baby
Baby Charlie suffers from a devastating disease, mitochondrial depletion syndrome
PA:PRESS ASSOCIATION
Baby Charlie suffers from a devastating genetic disease, mitochondrial depletion syndrome
Their barrister told the hearing that Charlie’s normal life did not cause him pain.
The specialist, who cannot be identified, suggested that treatment would be compassionate.
He proposed a therapy which he said would provide a “small chance” of a meaningful improvement in Charlie’s brain function.
“It may be a treatment but not a cure,” he said. “(Charlie) may be able to interact. To smile. To look at objects.”
He said he proposed trying the therapy for up to six months.
When the parents’ barrister Sophia Roper asked if Charlie could be “left worse off than he is at the moment” the doctor said he could “continue to deteriorate and he will lose all brain function”.
Debra Powell QC, for GOSH, revealed that the doctor saw Charlie’s brain scan from 27 March and wrote: “I think he’s in the terminal stages of his illness.”
The doctor accepted that he was “not suggesting that it can provide a cure for Charlie” and agreed that GOSH’s application to turn off his life support was a “reasonable position”.
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Parents of Charlie Gard vow they will never give up on their sick son
Charlie Gard is cradled in the arms of his mother Connie as dad Chris Gard puts his arm around her
SUPPLIED
Charlie Gard is cradled in the arms of his mother Connie as dad Chris Gard puts his arm around her
Charlie was doing well for six weeks after his birth before his health quickly deteriorated
FEATURESWORLD
Charlie was doing well for six weeks after his birth before his health quickly deteriorated
Charlie Gard
GOFUNDME/CONNIE YATES
Charlie Gard's parents have raised £1.2million just hours before the deadline
A Great Ormond Street specialist told the judge that Charlie had no spontaneous movements and could not hear.
She said therapy being proposed by doctors in the US would "very sadly" not help Charlie.
"He is extremely unwell," she said.
"He is having procedures which would cause pain to other people."
She said it was likely Charlie was experiencing pain but was unable to let anyone know.
Miss Yates, who broke down during the hearing, is set to give evidence at the High Court tomorrow.
A fundraising appeal set up by the couple, who are both in their early 20s, smashed its £1.2 million to get Charlie the pioneering treatment in the States only yesterday.
Writing on Facebook, the couple said: "You may have seen that we have reached our £1.2m target! Thank you so much for all of your support!
"We are currently preparing for court tomorrow where a judge will decide Charlie's fate.
"We will keep you updated when we can but once again, thank you for your continuing support."
A GoFundMe spokesman said: "The outpouring of support for Charlie and his family is absolutely incredible.
"This is the second largest campaign we've seen in Britain and the social sharing and number of donors are absolutely huge."
Chris Gard kisses Connie Yate's bump while pregnant with baby Charlie last year
SUPPLIED
Chris Gard kisses Connie Yate's bump while pregnant with baby Charlie last year
The little baby has an extremely rare condition, with only 15 reported cases worldwide
FEATURESWORLD
The little baby has an extremely rare condition, with only 15 reported cases worldwide
Connie penned a heartfelt letter, saying the couple had his best interests at heart
FEATURESWORLD
Connie penned a heartfelt letter, saying the couple had his best interests at heart
He added: "It is very rare and hugely moving to see this many people come together so quickly and it's testament to the power of Charlie's story."
Mr Justice Francis was given an overview of evidence at a preliminary hearing in early March.
He heard that Charlie, who was born on August 4 2016, had a form of mitochondrial disease - a condition which causes progressive muscle weakness.
A barrister representing doctors at Great Ormond Street Hospital gave some detail of the little boy's difficulties.
Katie Gollop QC said Charlie could not cry and was deaf.
She said doctors thought that a withdrawal of life support treatment would be in Charlie's best interests and told the judge: "The hospital's position is that every day that passes is a day that is not in the child's best interests."
Ms Gollop said Great Ormond Street specialists had considered the type of treatment Charlie's parents wanted him to have in America and decided against it.
Barrister Sophia Roper, who represented Charlie's parents, told the judge: "His parents believe that he is in much better shape than the hospital does."
Charlie's father Chris is fighting for his little boy to undergo treatment in the US
FEATURESWORLD
Charlie's father Chris is fighting for his little boy to undergo treatment in the US
The parents of Charlie have begged for help to get treatment for their son
PA:PRESS ASSOCIATION
Mr Justice Francis heard that an American hospital had agreed to accept Charlie as a patient if treatment could be paid for.
He heard Charlie would have to fly in an air ambulance with nurses if he went to America.
Lawyers said a hospital in Spain had decided against accepting Charlie as a patient.
This Morning viewers were left in tears during an emotional interview with baby Charlie's parents Connie and Chris.
Last week they told of their relief after doctors lifted a "do not resuscitate" order that would have stopped medics from trying to revive him if his condition suddenly deteriorated.

What is mitochondrial depletion syndrome?

Mitochondrial depletion syndrome is a rare recessive disorder that disrupts the body's ability to provide energy to the body's muscles, kidneys and brain.
The condition sees muscles rapidly weaken before the body goes into respiratory failure.
The most common cause of death is pulmonary infection with only a few patients surviving to their late childhood and teens.
There are currently no cures for the condition.
Postman dad Chris, 32, said: "The decision came out of the blue and was later confirmed by his consultant.
"Connie and I were thrilled because it is such a positive step in the right direction. We are hoping it means doctors believe there is hope for Charlie."
Charlie's case is set to be heard at the High Court on April 3, when Connie and Chris must convince a judge there is a chance the treatment could save the tot's life.
At a previous hearing Mr Justice Francis said it was "one of the saddest types of cases that can come before these courts".
He added that Connie and Chris were "utterly devoted to Charlie and have worked hard to become expert parents in this disease."
To support the family, go to the Help Save Charlie's Life page on GoFundMe.


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Julie Ali
One of my FB friends told me about this story and it is just horrible. The legal system in England is going to put this baby into palliative care even though the parents want to take the baby to the USA. They had a GoFundMe Campaign to raise the cash for the treatment but the legal system just wants the baby to die.
Why don't they let the baby have a chance? It's sick.
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