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.

 

[TrannyBO]

Give a bleach enema and he'll be fine.

 

[captn_kettle]

Reviving a thread since the last reply, since this is all us britfags bang on about between this and brexit.

An MRI was performed today, which is pretty routine given any case. The patents are apparently "optimistic", not quite sure why because the scans need to be sent to a high up neurologist for analysis which takes (under regular conditions) a 4-5 days. In this case it's going to be a "fuck anyone else's kid" and it's going to be sorted in under 24 hours.

Chris (Charlie's dad) continues to display that this is an emotional situation by continually attacking the hospital keeping them alive, and Connies health is still rapidly going downhill, going from a "glamourous mum" to skeletor as this shit takes hold of them.

Meanwhile the public have seen through it, and shifted from "poor parents" to "poor child".

These guys are mentally unstable and it's understandable, which is why the hospital and courts needed to be involved. They're fighting for a life they will never have.

 

[Null]

The US has since moved to give Charlie and his caretakers guaranteed access to the United States, and Charlie himself a Permanent Resident.

Quote from /pol/ just now that is amazingly relevant:

reminder we went through this in 2014

>little boy has brain tumor in inoperable location
>NHS says it's terminal, nothing we can do, just make him comfortable
>doctors in Spain says they can save him with an experimental treatment where they basically fire a particle accelerator at the tumor to destroy it rather than have to cut him open to get at it
>NHS says well that kind of procedure is not available on the NHS so it must be impossible fake pseudo-science
>in fact if the parents try to take him to Spain it would be futile and be child abuse
>the state now has guardianship rights over the boy and it's illegal for the parents to take him anywhere
>they do it anyway
>manhunt catches them in Spain and arrests parents
>high court rules to let him have the procedure in Prague
>the procedure works and the boys life is saved
>state realizes no one would support them being prosecuted so leave it
>boy now cancer-free and is going to school
>NHS still so booty blasted they wont let the kid get speech therapy he needs from them

https://en.wikipedia.org/wiki/Ashya_King_case

so the moral of the story is to ignore the NHS and break the law if you have to to try and save your kid

 

[Cryin RN]

There is actually no chance this will "save" Charlie.

 

[Null]

There is actually no chance this will "save" Charlie.

Even if it'd only extend his lifespan his parents are willing to pay for everything involved. The Courts exerting habeas corpus over the infant is a violation of everything that Government should serve to protect. If anything, it could produce extremely important data that can be used to make the next Charlie live a better life. It's not only obstructionist to the well-being of the child, it's not only an unwarranted exertion of control over an individual and their liberties, it stymies scientific medical progress.

 

[Mesh Gear Fox]

If anything, it could produce extremely important data that can be used to make the next Charlie live a better life.

But we have enough people in this country that bringing him over is a tremendous waste of resources. He is not unique enough that it's worth all the money to bring him to the States. I realize the parents are going to pay for the transport, but it's still a major waste of resources. They data they collect from him will not change anything really. It sucks, but that's the truth.

 

[Null]

But we have enough people in this country that bringing him over is a tremendous waste of resources. He is not unique enough that it's worth all the money to bring him to the States. I realize the parents are going to pay for the transport, but it's still a major waste of resources. They data they collect from him will not change anything really. It sucks, but that's the truth.

They have two million dollars privately raised for this. They've already paid for it bro. The NHS is not paying a red cent.

 

[Mesh Gear Fox]

They have two million dollars privately raised for this. They've already paid for it bro. The NHS is not paying a red cent.

Clinical resources have to be rationed. There is nothing to be gained by flying him all the way over here. A single patient will not yield any significant results. If he had some ultra-rare disease, then yeah, but he doesn't. Why waste all this time, money, meds, supplies for someone who will not benefit at all from treatment? Just because they have the money doesn't mean that this isn't an enormous waste.

I guess that's my point. Why waste all of this shit on someone who's going to die and won't benefit at all from experimental treatment (the study authors won't get that much data from him)?

 

[Daughter of Cernunnos]

I think it's shitty that societal good is not allowed to be considered legally. It's not everyday you have a kid with such a rare disease to work with. It should have been allowed for the future development of treatments and understanding of this disease even if the kid himself would not be helped personally.

It might give them more to work with if he is alive even if it's not really living sentiently than experimenting on the corpse. They could do both living and postmortem research. It would be interesting to see how the living body responds to the experimental treatments.

What a waste to not do the research and what an attack on the freedom of the parents.

"Charlie is said to be one of only 16 people to have ever had the condition."

https://www.thesun.co.uk/news/32484...ondrial-depletion-syndrome-america-treatment/

 

[AnOminous]

Clinical resources have to be rationed. There is nothing to be gained by flying him all the way over here. A single patient will not yield any significant results. If he had some ultra-rare disease, then yeah, but he doesn't. Why waste all this time, money, meds, supplies for someone who will not benefit at all from treatment? Just because they have the money doesn't mean that this isn't an enormous waste.

It seems to be well within the decision making rights of the parents to do this even if it is utterly futile. Unless the NHS is paying for it, how is it up to them? It's one thing to deny a futile treatment, which this obviously is, but entirely another to prohibit family from spending their own money to get it. If the NHS is correct, also, there is absolutely no hope of this child ever achieving consciousness again, so the child can't be harmed by heroic treatment.

 

[Johnny Bravo]

A single patient will not yield any significant results. If he had some ultra-rare disease, then yeah, but he doesn't.

Uh, yes he does.

 

[Boris Johnson]

It's worth a read of the judgement which goes a bit into why the decisions have been made the way they have, whether or not you agree with them - it gives a decent amount of background to the case.

https://www.judiciary.gov.uk/judgments/great-ormond-street-hospital-v-yates-and-gard/

 

[Dysnomia]

The condition is genetic, so there is no cure for your genes yet and there is brain damage. Even if he lived, he would need constant attention and would not be able to contribute to the genepool. The hospital made a hard but logical decision.

He's a vegetable and should be allowed to die with dignity. His parents are desperate for a miracle and that really is sad. But it won't happen. The prognosis for mitochondrial DNA depletion is grim. Most kids don't even survive childhood. Keeping someone hooked to machines like that when there is no chance of recovery is inhumane and it should not be allowed.

There is another child who did benefit from the treatment though.
https://www.thesun.co.uk/living/3318065/arthur-olga-estopinan-arturito-charlie-gard-court-case/

But Arturito has a different form of the illness, TK2. Charlie has RRM2B, which is far more rare with only 16 known cases. I don't know the specifics. But maybe they are different enough that it won't work with the same success at all.

 

[Sinner's Sandwich]

There was a time when people left children like this to die in the forest or threw them off a cliff.

Now we can end their suffering without pain and yet they MUST BE kept alive.

 

[Dunsparce]

Uh, yes he does.

@Mesh Gear Fox will probably avoid the thread now, or if he doesn't he will backpedal.

 

[Lurker]

As I'm sure many of you know, there are people in this world who have no problem taking advantage of horribly disabled children. Look at Lola and Claire Hartley, Jaxon Strong, and possibly the most egregious case that I know of, Jahi McMath. All of these childrens' parents are taking advantage of their children by playing on peoples' emotions in order to get money. It's because of people like this that you have cynical people who think that Charlie Gard would be better off dead.

The thing is, unlike the parents of the children mentioned above, I don't know much about the Gards. They managed to raise 1.8 million dollars, and they claim they're willing to use that money to pay for anything that might save Charlie. If that's the case, and they want to waste money on a futile attempt to save their son, fine. Seems pointless to me, and apparently to the doctors in the UK, but hey, it's not my kid, so whatever.

The only mildly concerning thing is that the hospital that decided to take him in the US is claiming that they'll do this treatment or whatever for free. Now we all know that free isn't actually free. I don't know if the Gards can force the hospital to take their money, but if they can't, that money's coming from somewhere, and that somewhere is probably taxpayers. I doubt some people would be happy knowing that their tax dollars are being used to fund an experimental treatment that we all know won't fucking work, and on a child that isn't even from this fucking country.

I mean, ultimately it's whatever. Personally I'm one of those people who think that the kid should be allowed to die in peace, but I'm not a parent, and he's not my kid.

 

[Null]

He's a vegetable and should be allowed to die with dignity.

This isn't a 70-year-old man with brain cancer who's just lost control of his bowels and is asking for help from Dignitas, this is a unique medical condition with an available treatment and the government is preventing him from seeking it. If they take the child out of their god forsaken Island, they become fugitives of the law.

 

[AnOminous]

I doubt some people would be happy knowing that their tax dollars are being used to fund an experimental treatment that we all know won't fucking work, and on a child that isn't even from this fucking country.

They already have the treatment lined up. The shortage is in patients to test it on. Over $1.7 million in funding is already lined up to cover any expenses.

He's a vegetable and should be allowed to die with dignity.

If he's a vegetable, he's already effectively dead.

 

[captn_kettle]

The US has since moved to give Charlie and his caretakers guaranteed access to the United States, and Charlie himself a Permanent Resident.

Quote from /pol/ just now that is amazingly relevant:

reminder we went through this in 2014

>little boy has brain tumor in inoperable location
>NHS says it's terminal, nothing we can do, just make him comfortable
>doctors in Spain says they can save him with an experimental treatment where they basically fire a particle accelerator at the tumor to destroy it rather than have to cut him open to get at it
>NHS says well that kind of procedure is not available on the NHS so it must be impossible fake pseudo-science
>in fact if the parents try to take him to Spain it would be futile and be child abuse
>the state now has guardianship rights over the boy and it's illegal for the parents to take him anywhere
>they do it anyway
>manhunt catches them in Spain and arrests parents
>high court rules to let him have the procedure in Prague
>the procedure works and the boys life is saved
>state realizes no one would support them being prosecuted so leave it
>boy now cancer-free and is going to school
>NHS still so booty blasted they wont let the kid get speech therapy he needs from them

https://en.wikipedia.org/wiki/Ashya_King_case

so the moral of the story is to ignore the NHS and break the law if you have to to try and save your kid

Lol the Ashya King case was full of horseshit. He was supposed to undergo a round of chemo to kill off any remaining cancer cells which spread throughout his body as per the court order, which they didn't do and then claimed he is "cancer free". It's pretty likely he's just going to get cancer again.

I wasn't on the farms when it happened, but they were pretty lolcow worthy. They threatened the cancer charity when the nhs finally agreed to fund it because they wanted the money for themselves instead of another kid, and made a private Facebook to attack the charity and jam the hospitals switchboard.

It wasn't the first documented chimpout either, when she was pregnant with Ashya she protested in a bikini outside a primary school over a row to do with a bush.

Most of the news coverage came from them selling the story to the highest bidder to get more money. By the time the hospital did a documentary about what actually happened and the reasoning behind why they denied treatment, everyone already realised they were just profiting off Ashya and the family were insane.

 

[Enclave Supremacy]

If anything, it could produce extremely important data that can be used to make the next Charlie live a better life. It's not only obstructionist to the well-being of the child, it's not only an unwarranted exertion of control over an individual and their liberties, it stymies scientific medical progress.

That's the point. You can't use a non-consenting child for medical experimentation or as an exercise to grab data, no matter how noble the goal. I agree obviously that it would be the most practical thing to do in this case rather than just let the kid die but that's what the law is. They can't prove that this treatment will actually help the kid so they can't let him go as it would be considered a dereliction of the doctors duty of care.