UN Charlie Gard, 10 months old, is denied experimental treatment in US - Time for some depression

Meet Charlie.

http://www.bbc.co.uk/news/uk-england-40206045

Charlie has a very rare genetic condition that effectively confines him to a vegetative state. He cannot even breathe without the help of a machine. His parents wanted to take him to the US for some experimental therapy that MIGHT have been able to save him. The hospital he is in disagreed. So they took this case to the Supreme Court.

The Supreme Court has rejected an appeal by the parents of sick baby Charlie Gard, over plans to take him to the US for treatment.

Chris Gard and Connie Yates want the 10-month old, who suffers from a rare genetic condition, to undergo a therapy trial.

His mother broke down and screamed as the decision was announced.

Charlie can stay on life support for 24 hours to give the European Court of Human Rights a chance to give a ruling.

He has been in intensive care at Great Ormond Street Hospital since October last year.

The hospital said therapy proposed by a doctor in America is experimental and that Charlie's life support treatment should stop.

Charlie has mitochondrial depletion syndrome, a rare disorder that affects the genetic building blocks that give energy to cells.

The family division of the High Court agreed two months ago that the hospital could withdraw Charlie's life support.

His parents have raised more than £1.3m through an internet appeal, in the hope they could take him to America for an experimental treatment.

Specialists in the US had offered a therapy called nucleoside.

Charlie's supporters gathered outside the court ahead of the hearing.

Holding pictures of the 10-month-old they chanted 'Save Charlie Gard' and "give him a chance".

Inside his parents waited for the decision. This is the final court in the UK able to hear their case.

Justice Lady Hale began by praising their devotion, as parents we would all want to do the same she said.

But as judges and not as parents they were concerned with the legal position and the proposed appeal she said was refused.

Charlie's mother Connie left the court wailing and shouting "they've put us through hell".

Chris, Charlie's father, held his head in hands and cried.

This may though not be the end. They want to try and take their case to the European Court of Human Rights.

Katie Gollop QC, leading Great Ormond Street's legal team, said the case was "sad" but not "exceptional".

She said the couple seemed to be suggesting that "parents always know best".

"Fundamentally the parents don't accept the facts," she said. "They don't accept that nucleoside therapy will be futile."

The court had earlier heard how Charlie could not could see, hear, move, cry or swallow.

Ms Gollop added: "He is on a machine which causes his lungs to move up and down because his lungs cannot go up and down.

"Charlie's condition affords him no benefit."

Following the ruling Ms Yates screamed outside court: "How can they do this to us?"

"They are lying. Why don't they tell the truth?", she said.

Charlie's life support machine will continue until Friday at 17:00 BST to give judges in Strasbourg, France, time to look at the case, the court said.
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The case is now going to Strasbourg to be heard by the ECHR. Charlie will be kept on life support for another 24 hours to give the judges there time to think about the case.

This is sad, but I think the correct decision would be to shut off that life support and end this poor child's suffering.
 
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Kari Kamiya said:
F

So since the baby didn't die with dignity, does this mean no one has won the argument and the world just keeps spinning?
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It was moved to hospice so they get to claim it "died with dignity". A couple of hours of dignity at the end trumps months of none, just like a few hours of heavy sedation and painkillers lets people invoke "died peacefully" despite months of suffering.
 
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mulliganfarmer said:
Those aren't rumblings, it's a fact. Someone close to her (her brother, I think) has been passing around her bank details for direct donations for a long time now. Along with Chris' sister selling keychains and air fresheners with Charlie's face on them.

Far be it for me to armchair diagnose anyone, but the parents have struck me as narcissists since day one. Charlie isn't the only incompatible-with-life child ever treated at GOSH, most parents with dying children are capable of listening to advice from the experts and letting their child go in dignity and peace. Charlie's parents appear to have had this idea in their head of what Charlie was going to be like, diagnosis be damned, and they're not accepting any other perspective that doesn't fit this idea. You can see it when they talk about watching Cbeebies with him (despite him being blind and unresponsive), him having a favourite toy (again, blind and unresponsive), ideas of this miracle treatment turning him into a normal boy that plays football (impossible even if the treatment did work, the brain damage is irreversible and they were told this multiple times) and now the idea that he can die at home when he's hooked up to too many machines to be transported safely from the hospital.

I have no doubt they're grieving but it seems like their grief is more for themselves as bereaved parents than for Charlie himself.
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It's eerily reminiscent of the Spartley Spooligans, no?
 
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Beaniebon said:
I can't stand parents like this and Gwen Hartley who try to keep their clearly dying (if not nothing but a corpse kept alive by machines), not even there children alive and suffering. Not to a-log but it's inhumane. Let things like this live a short life and focus on comfort, not longevity, and let them slip away when it's time.
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At least they didn't try to turn Charlie into another Jahi McMath. He's at peace now. There was nothing they could do and he'd never be normal because of the brain damage.
 
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TopCat said:
http://www.bbc.co.uk/news/uk-england-london-40752120
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I hate that an innocent child has been taken away while pieces of shit on this forum continue to exist. But I'm also glad the way he went. His mum and dad by his side instead of REEEEEEEING at the courts for unrealistic demands.

I checked Connies Facebook to see if there were any updates? Nothing. And that's how it should be.

They're now spending quality time with Charlie, not unrealistic optimism. They're not screaming like a banshee if they don't get their own way, they're focused on their boy.

And this is how it should have been from the start.
 
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NotAKitty said:
It's eerily reminiscent of the Spartley Spooligans, no?
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That was actually one of the first things that occurred to me when I first became aware of Charlie and his mental parents (I spend a lot of time on a popular UK parenting forum where Charlie was often discussed). Other parents of severely disabled and terminally ill children found their behavior grotesque. I don't think it's a coincidence that they announced they were going to let the hospital turn off the machines the day after a public statement was made about the death threats the hospital staff were getting. They were losing the public's goodwill.

This won't be the last we hear of them. They didn't get their way so prepare for incoming narcissist rage. There's still a funeral to turn into a media circus and probably a load of frivolous lawsuits, if any lawyer has the stones to represent them.
 
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mulliganfarmer said:
(I spend a lot of time on a popular UK parenting forum where Charlie was often discussed).
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Mumsnet?

This won't be the last we hear of them. They didn't get their way so prepare for incoming narcissist rage. There's still a funeral to turn into a media circus and probably a load of frivolous lawsuits, if any lawyer has the stones to represent them.
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Indeed. I've already seen comparisons to the McCanns so I fully expect that shit, but more towards the Karen Matthews end of things (The McCanns only get an undercurrent of hate really due to lack of evidence)
 
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captn_kettle said:
I checked Connies Facebook to see if there were any updates? Nothing. And that's how it should be.

They're now spending quality time with Charlie, not unrealistic optimism. They're not screaming like a banshee if they don't get their own way, they're focused on their boy.

And this is how it should have been from the start.
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Good. At-least they did better than the parents of that other kid who died, Bradley Lowrey, I think it was. Where when he died the parents released a facebook frame of a blue-heart and told people to put it on their avatars to "turn Facebook blue" and then held some garish funeral where thousands of local randoms turned up in superhero costumes and football shirts.
 
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Enclave Supremacy said:
Good. At-least they did better than the parents of that other kid who died, Bradley Lowrey, I think it was. Where when he died the parents released a facebook frame of a blue-heart and told people to put it on their avatars to "turn Facebook blue" and then held some garish funeral where thousands of local randoms turned up in superhero costumes and football shirts.
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Charlie has only just passed away, give it time.
 
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Daughter of Cernunnos said:
Charlie Gard's little brother was born healthy last yr.
news.sky.com

Charlie Gard's parents: 'Baby Oliver has made our fight for Charlie's Law even more important'

Connie Yates and Chris Gard want to give other parents the chance to avoid long and distressing court battles.
news.sky.com news.sky.com
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Wish they wouldn’t use their new child to try and push legislation that would give parents with munchausens the chance to make their severely disabled or ill babies suffer longer.
 
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