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.

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.

 

[captn_kettle]

The doctor who travelled from the states did an MRI of charlie to assess him. The results were read out to the court hearing, saying "it makes for a very sad reading".

This was the first time the parents had heard about this, and understandably got very emotional in court, with Connie screaming and Charlie's dad shouting "evil" at the people who announced it.

GOSH have also had messages including death threats. They released a statement on their Facebook page, and Connie did another statement on the status basically saying "we're also getting backlash from the death threats, why didn't you say that?".

Interestingly I looked at Connies Facebook picture which was (understandably) about Charlie. I'm not posting it here but it's a picture of another child with his condition on a respirator, and another picture where said child has gone on to be a typically normal child. Below is Charlie, and another picture with a question mark.

There is a lot of false optimism for this child. He is profoundly brain damaged and very ill. This brain damage that was said as a "very sad reading" cannot be reversed. Even if the treatment made an inkling of difference, he is still in a vegative state, and there is no miracle cure for the brain damage he has sustained.

 

[CWCissey]

The parents are arseholes. They seriously said that GOSH should have told people not to say hurtful things to them or the hospital staff.

Tumblr mentality at it's finest.

 

[AnOminous]

The parents are arseholes. They seriously said that GOSH should have told people not to say hurtful things to them or the hospital staff.

Tumblr mentality at it's finest.

I wonder if any of this has to do with the fact that anyone who has had to deal with these assholes probably hates their guts.

I mean, obviously, even God hates them or they wouldn't even be in this situation.

 

[CWCissey]

I wonder if any of this has to do with the fact that anyone who has had to deal with these assholes probably hates their guts.

I mean, obviously, even God hates them or they wouldn't even be in this situation.

Lolcow thread when?

The fact they just keep going is what pisses me off. Yeah I agree that they should be allowed to go to America off their own dime in better circumstances, but when NHS doctors (who despite being overworked and underpaid, are still considered the best in the world) tell them it's hopeless, there's little chance of him being nothing more than a turnip, I'd fucking listen.

 

[Lunatic Fringe]

The parents have finally agreed to end the legal battle.

I feel sorry for them, I really do but this kid isn't going to get any better. You cannot undo profound brain damage and that's what he has.

 

[Lurker]

The parents have finally agreed to end the legal battle.

I feel sorry for them, I really do but this kid isn't going to get any better. You cannot undo profound brain damage and that's what he has.

I want to add that, as per the article, the parents want to use the money donated to them to set up a charity so that other babies may be saved.

Though apparently GoFundMe, which they used to raise the money, wants to discuss what to do with the money with Charlie's parents. The cynic in me is assuming they (GoFundMe) want a cut. Fuck's sake, just let Charlie's parents put the money into something useful.

 

[Lorento]

Well, as long as the money goes to something worthwhile, perhaps a charity in Charlie's name, it'll mean this story might have a bittersweet ending.

 

[Melkor]

I'm just glad he doesn't have to suffer anymore.

 

[Huitzilopochtli]

Tl;dr did they bury the kid yet?

 

[Caddchef]

His family are still totally delusional but as already said by others, i'm glad his suffering is almost over.

 

[Huitzilopochtli]

This is Terry Shaivo all over again, only slightly more sympathy inducing.

 

[captn_kettle]

"On 13 July he stated that not only had he not visited the hospital to examine Charlie but in addition, he had not read Charlie's contemporaneous medical records or viewed Charlie's brain imaging or read all of the second opinions about Charlie's condition (obtained from experts all of whom had taken the opportunity to examine him and consider his records) or even read the Judge's decision made on 11 April," the statement said.

"Further, GOSH was concerned to hear the professor state, for the first time, whilst in the witness box, that he retains a financial interest in some of the NBT compounds he proposed prescribing for Charlie.

http://news.sky.com/story/great-ormond-street-hits-out-at-us-doctor-over-charlie-gard-10960025

Plot twist.

 

[Lurker]

http://news.sky.com/story/great-ormond-street-hits-out-at-us-doctor-over-charlie-gard-10960025

Plot twist.

oh, fuck off with that shit. the doctor should apologize for giving the parents false hope? the parents were fucking delusional from the start. they already had false hope.

and everyone fucking told them that the treatment wasn't going to work anyway, so fuck 'em.

 

[Huitzilopochtli]

It just goes to show you, there are only two types of Asian doctors. Those who actually know their shit, and those who are probably practicing without a licence.

 

[captn_kettle]

oh, fuck off with that shit. the doctor should apologize for giving the parents false hope? the parents were fucking delusional from the start. they already had false hope.

and everyone fucking told them that the treatment wasn't going to work anyway, so fuck 'em.

My bad, I missed out an important part of the statement from GOSH.

TL;DR the doctor offering the treatment didn't read GOSHs notes, but retained a financial interest.

 

[Lurker]

My bad, I missed out an important part of the statement from GOSH.

TL;DR the doctor offering the treatment didn't read GOSHs notes, but retained a financial interest.

did the parents honestly believe the doctor was going to do the treatment out of the goodness of his heart? of course there was going to be some sort of ulterior motive.

i mean, the doctor was in way over his head and he probably should have read the notes on Charlie, but expecting him to apologize to the delusional parents? please.

 

[captn_kettle]

did the parents honestly believe the doctor was going to do the treatment out of the goodness of his heart? of course there was going to be some sort of ulterior motive.

i mean, the doctor was in way over his head and he probably should have read the notes on Charlie, but expecting him to apologize to the delusional parents? please.

Don't get me wrong, the parents are delusional. It's just funny to see this man people were heralding a "hero" was just in it for the shekels.

I don't know how true it is, but apparently the parents refused another MRI after the seizures kicked in, only accepting one when the doctor from the states came over. They were living in the belief the condition he was in was because of the disease.

The statement pretty much reads "we were the ones who initially offered it. But after seizures set in, it wouldn't offer a better quality of life". Apparently the worst was in January, when he experienced bouts of seizures over the course of 17 days.

GOSH press release is here: http://www.gosh.nhs.uk/news/latest-...tion-statement-issued-high-court-24-july-2017

 

[CWCissey]

At fucking last!

Hopefully Miss Yates and Mr Gard set up this charity and keep quiet now, as they seem the type to start McCann-ing.

 

[repentance]

Though apparently GoFundMe, which they used to raise the money, wants to discuss what to do with the money with Charlie's parents. The cynic in me is assuming they (GoFundMe) want a cut. Fuck's sake, just let Charlie's parents put the money into something useful.

Go Fund Me takes a 7%+ fee anyway.

When someone has raised money for a specific purpose and something happens which means it's not going to be spent on that purpose, it's appropriate for GFM to intervene. I doubt many donors to this campaign will want their donation refunded, but clarifying how Charlie's parents intend to spend it is the right thing to do.

Hopefully Miss Yates and Mr Gard set up this charity and keep quiet now, as they seem the type to start McCann-ing.

It's somewhat pointless to set up a charity and keep quiet. Competition for donor dollars is fierce so you need to be highly visible.

 

[Fareal]

http://news.sky.com/story/great-ormond-street-hits-out-at-us-doctor-over-charlie-gard-10960025

Plot twist.

I admit I was both surprised at this, and deeply disappointed that a medical professional would act this way.

I honestly expected he had at least read the notes and was familiar with recent scans etc.