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.
 
It's obvious at this point the American was obviously just selling the snake oil to the parents without even giving two shits if it actually worked, to the point where if he was British the likelihood is is that the General Medical Council would likely be holding a hearing on whether he should remain on the register.

Yeah. Reminds me of the deranged Italian asshole that is offering to do a head transplant on that Russian.
 
Yeah. Reminds me of the deranged Italian asshole that is offering to do a head transplant on that Russian.
You mean the guy with muscular atrophy who sits in a chair literally all the time completely unable to move? If I were him, I'd be asking anyone I could to chop my head off, and I'd not even want them to reattach it to anything.

All I hear in this thread is a lot of shitty British people and British-sympathizers decrying experimental medicine. Guess what, assholes? Experiments are how we get shit done. Do you have any idea how much we learned from Nazi vivisections? A fuck ton. Leonardo DaVinci would dig up cadavers and dissect them to see how the blood vessels laid in the body and how the muscles flexed.

Experiments advance art and science and sometimes it involves chopping off a head, digging up a corpse, running some chemicals through a potato child, or mincing up Chinese people in a secret laboratory. Stop being obstructionists and stop denying people individual freedom "for their own good".
 
So, in the interest of protecting individual freedoms, you're going to bat for Nazi vivisection?

Basically, you are saying that personal freedom trumps collectivism, above all else, how dare anyone get in the way of freedom, unless your personal freedom stands in the way of medical progress, in which case, any number of ethical violations and actual crimes against humanity are okay, freedom and consent be damned, because the collective is entitled to the wisdom brought about from experimenting on your parts?
 
Last edited by a moderator:
It's a very good thing we have laymen like you to make these decisions on behalf of medical doctors.
Guess I missed the point where you became a PHD yourself. :story:
Also, it's a moot point, since I am more or less repeating what the doctors said about Charlie.
Hell, afaik even the doctors offering the treatment said it would not extend his life.

Abysmal analogy. Textbook strawman.
Hey, if you can use hyperboles, so can I.

Suffer? In what regard? Is the crux of the argument not "it's a potato so just let it die"? If it's a potato, how does it suffer? Mentally well children suffer going through chemotherapy, but that is allowed, even if the cancer's survival rate is barely non-zero.
As far as I am concerned, it is not the crux of the argument. There's a thing called "sanctity of life" and whether or not you believe in that nonsense, you have to accept the fact that a lot of people do. And his rights don't end just cause he turned into a potato. I mean, just look at ADF...
Charlie suffered by being forced to live on in such a terrible condition. I seriously hope that he was not aware of any of his situation.
And on the other hand: Chemoterapy is a well-tested therapy that directly benefits the patient. In certain cases, it might be too late or fail, but it has a distinct and direct potential benefit for the child - in stark contrast to the therapy that Charlie would have gotten.
You are comparing apples and oranges, mate.

At what point do you realize how awful this sounds? There is a patient, a doctor has a treatment, the parents have money, and the government is threatening to imprison people over that transaction.

Where does the Government get to stop exerting this force? What if the Government decides to mandate abortions for this disease? Your logic applies to that equally. If you get scan of your fetus, they see that there is a 99% chance of it being born exactly like Charlie, then what?

If you're going to claim the NHS can't dictate to an expecting mother what to do with her body, then how can they threaten to imprison her for seeking treatment for that child after it's born? The NHS can obviously control people's actions by threat of imprisonment. The sentences "if you take that baby to get treatment, we will imprison you" and "if you give birth to that baby, we will imprison you" are not too distinct are they?
Again, you are comparing apples and oranges.
You equate the government preventing an apparently useless therapy with the government going nuts and going on a fetus-killing spree. I mean, sure, the authority of the goverment has to end somewhere.
I understand your point, it is a good point you are making. I just think that the UK has the best interests of such patients at heart in trying to enable said patients to live without undue suffering and some modicum of dignity by preventing futile or even harmful attempts at treatment that they haven't even consented to.

Besides, this is a slippery slope in both ways.
When you allow parents the ultimate and last say in what they wanna do with their sick kids, you end up with children dying for autistic reasons, such as people being stupid and falling for scams.
If you put all authority on the goverment, you end up in an awful position where the goverment might prevent potentially helpful therapies for autistic reasons.
Neither of these situations is good.

At the moment, the situation in the UK is leaning more towards the latter, however it's not like the UK is preventing possibly good treatments for no reason.
We've just been witnessing an extreme case where the parents cling to something, hoping it will somehow magically fix the situation while the doctors involved tell them repeatedly that there is no hope.

The child's rights!? Like the right to seek treatment?? The only right being enforced here is the right to die! NHS went full fucking DIGNITAS on a potato and you're jumping up and down cheering that no one had any fucking say in the matter besides the government.

You can stress it as much as you'd like mate, you're fucking wrong.
Actually, it was the child's right to not suffer through a treatment that has no chances of improving its lot and thus reinforcing its right to retain his bodily integrity.
Also I am not "jumping up and down cheering". I am merely stating that given Charlie's situation, I am sympathetic to the decision and lament the cruel fate that he and his parents had to suffer. I understand the reasoning behind this decision is all I am saying.

Your "religious nutjobs" are not doctors with fucking degrees in medicine bro.
I am talking about Charlie's parents who have no PHDs either.

Because that's the only fucking thing that matters. You are completely oblivious to the broader implications in the fucking medical organ of government being able to dictate to its people that they can't even leave the country to pay for medicine.

The UK is not preventing anyone from leaving the UK to seek whatever treatment they wish to waste their money on, no matter how futile. At least not as far as I know.
They are, however, not allowing parents to get their kids futile medical treatments since they feel the moral obligation of defending said children's rights of bodily integrity.

Do you think the UK prevented this for some petty reason? Cause I certainly wouldn't know what you think might be the reason to apparently let this kid die without a supposedly oh-so-great treatment.

But at this point, I doubt this conversation will go anywhere but downwards, since there seems to be differences in opinion based on certain cultural perceptions of the rights of individuals and the extend of the authority of parents over their children.
At this point it might be best to agree to disagree.

So, in the interest of protecting individual freedoms, you're going to bat for Nazi vivisection?

Basically, you are saying that personal freedom trumps collectivism, above all else, how dare anyone get in the way of freedom, unless your personal freedom stands in the way of medical progress, in which case, any number of ethical violations and actual crimes against humanity are okay, freedom and consent be damned, because the collective is entitled to the wisdom brought about from experimenting on your parts?
There's a slippery slope based on the "the end justifies the means" mindset of just going through with experiments on living human beings as far as there is medical knowledge to be had.
If the well-being of a single patient is outweighted by potential benefits to future patients, you soon end up with people like Josef Mengele.
 
Last edited:
It's no that he was a potato that made the decision. It was that the medical equipment keeping him alive, along with very regular seizures was giving indicative signs of distress and pain. Sending him away to America would have had no benefit to either the child, the doctor, parents or even medical research. Any research would have been frivolous, since usually for research take place there needs to be controlled factors.

Since he had already sustained irreversible brain damage, there would have been no way at all of telling if the medication worked or not. If the doctor proposing the experimental treatment had come to the UK after Charlie's extensive seizures, he possibly could have offered the best course of advice based on his own findings. The point of no return was when the epilepsy set in, and it set in hard.

I don't think anyone is against experimental treatment, as you said it's what gets shit done and how we progress in the medical profession. But when the proposed medication is about as useful as a witch doctors mix of herbs and the cost is living out each day in pain only to suffer the same fate, it begs the question of whether the parents are doing it for themselves or the child.

Personally I thought they should have buggered off over to the states though. Their child, their choice. It was about the only way they would have snapped out of their delusion that this would work even when suffering extensive seizures. Not my child and if he died in the journey or the treatment doesn't work, I'm not losing sleep. You're damned if you do and you're damned if you don't.
 
All I hear in this thread is a lot of shitty British people and British-sympathizers decrying experimental medicine. Guess what, assholes? Experiments are how we get shit done. Do you have any idea how much we learned from Nazi vivisections? A fuck ton. Leonardo DaVinci would dig up cadavers and dissect them to see how the blood vessels laid in the body and how the muscles flexed.

I know I'm never going to be a newborn baby with a terminal illness in this lifetime, but if I had to be born into that situation, I would prefer that the people making decisions about my life or death would be parents who actually cared about me and not some faceless bureaucrat on a literal death panel.
 
But at this point, I doubt this conversation will go anywhere but downwards, since there seems to be differences in opinion based on certain cultural perceptions of the rights individuals and the extend of the authority of children.

Yeah.

There also is a relative leeway here in the states to neglect, faith heal, or woo-woo/alternative medicine your sick/disabled kids to death, if it's based on "sincerely held belief."

This has been making the rounds here recently.

http://www.ktvb.com/news/health/pra...-woman-wants-her-parents-prosecuted/143065904
 
Yeah.

There also is a relative leeway here in the states to neglect, faith heal, or woo-woo/alternative medicine your sick/disabled kids to death, if it's based on "sincerely held belief."

This has been making the rounds here recently.

http://www.ktvb.com/news/health/pra...-woman-wants-her-parents-prosecuted/143065904

This is where I said that you're damned if you do and you're damned if you don't.

At what part do you draw the line on blaming the parents and supporting the parents? And who makes that decision?

Cases like this are pretty easy, the parent is nuts. Charlie's is a lot more difficult, and the line is much more blurred.
 
Cases like this are pretty easy, the parent is nuts.

They have a constitutionally protected right to be that nuts, though.

Also, once you start veering off into quackery and "hope" and "experimental" treatments that basically amount to The Institute of Some Asshole's Garage, people get all emotional and stupid, too. I am trying to say this without powerleveling too much, but the average sort of person gives "grieving" parents a lot of mileage in terms of what does and doesn't qualify as tortuously awful when it comes to disabled children.
 
They have a constitutionally protected right to be that nuts, though.

Also, once you start veering off into quackery and "hope" and "experimental" treatments that basically amount to The Institute of Some Asshole's Garage, people get all emotional and stupid, too. I am trying to say this without powerleveling too much, but the average sort of person gives "grieving" parents a lot of mileage in terms of what does and doesn't qualify as tortuously awful when it comes to disabled children.

The only thing I could think is "with great power comes great responsibility".

And I have noticed that. Most people going against the grain from the start have also been in the same position. They've had to make that fucking difficult decision that no parent wants to go through, to choose when enough is enough.
 
So, in the interest of protecting individual freedoms, you're going to bat for Nazi vivisection?

Basically, you are saying that personal freedom trumps collectivism, above all else, how dare anyone get in the way of freedom, unless your personal freedom stands in the way of medical progress, in which case, any number of ethical violations and actual crimes against humanity are okay, freedom and consent be damned, because the collective is entitled to the wisdom brought about from experimenting on your parts?
What crimes against humanity? Why would experimental treatment on Charlie be a crime against humanity?
 
  • Agree
Reactions: Marvin
I don't think experimental treatment on Charlie is comparable to Nazi vivisection and chink mincing.
That is why I refered to it as a slippery slope. And the first step is by no means a small or insignificant one.
You take away Charlie's rights to retain his bodily integrity to make him undergo a pointless treatment just to gather some data.

This mindset takes the well-being of the group and puts it over the well-being of the individual.
That is an incredibly dangerous mindest that can lead to all sorts of atrocities.
At some point, you end up with research groups infesting a small town with smallpox, to see how exactly it spreads.
This is not something that we're speaking about purely in hypothetics. This is what happened 80 years ago.
 
It's kind of wild that a literal death panel has power over a child's life and the parents are robbed of any agency in making decisions about their child's future. Doesn't even look like they'll let the baby die at home.

On the other hand jfc best case scenario even if the therapy worked the kid would be worse off than Kylie Brooks and be miserable their entire life just let the kid die and pop out another
 
Last edited:
Back