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[Hyun Sai]

For the posters tempted to make "if you don't have a child you just don't understand" drivebys:

Seriously, reading isn't that hard.

 

[Jezbollah]

http://www.bbc.co.uk/news/uk-england-london-40685461

Is it any surprise that dickheads are sending death threats when the parents are screaming abuse in court and denying the evidence of the brain damage?

It's terrible that the parents found out about the results of the scans in court, without seeing them in private first.

However, they should not at all be associated with those sending death threats to those in Great Ormond Street Hospital. Those people may only serve to turn the sympathy of the public away from the parents.

GOSH have literally been responsible for better lives for thousands of kids. For those looking on the outside sending death threats is just utterly disgusting.

 

[Wanderer5]

For the posters tempted to make "if you don't have a child you just don't understand" drivebys:

Damn, poor kid. It is devastating, but I think it be for the best to end his life with the condition he is in.

 

[poppabk]

It's terrible that the parents found out about the results of the scans in court, without seeing them in private first.

However, they should not at all be associated with those sending death threats to those in Great Ormond Street Hospital. Those people may only serve to turn the sympathy of the public away from the parents.

GOSH have literally been responsible for better lives for thousands of kids. For those looking on the outside sending death threats is just utterly disgusting.

Not only death threats to doctors but harassing the parents of sick children.

 

[Jezbollah]

Not only death threats to doctors but harassing the parents of sick children.

Indeed. Even worse.

 

[LostCaress]

If you don't have a child, you can't understand.

If it was my child, and there was a .000000001% chance at a cure, by a licensed medical professional, and the government wouldn't let me take my child to try it...heads would roll.

Oh so if there's a chance a child gets cured by a medical treatment, you would try it and be angry if the government wouldn't let you? Nice, I am not a parent so I always thought that if my kid was dying and there was a possible (albeit small chance) cure I would just say "fuck it"! I am glad parents like you are brave enough to make these bold statements! It obviously doesn't apply to the present case, but thanks anyway!

 

[IdreamofHIME]

Let them take the baby away.
The lives of good doctors isn't worth risking against the followers of these two science deniers, their magic Wizard Pope and Emperor Trump.

 

[CharmingCharlie]

If you don't have a child, you can't understand.

If it was my child, and there was a .000000001% chance at a cure, by a licensed medical professional, and the government wouldn't let me take my child to try it...heads would roll.

Well I don't have a child and I can understand the drive a parent would have if a cure existed for your child. However it has been said there is NO cure for this baby. If there was a cure that stood any chance of working the courts would not have ruled that the baby be taken off life support.

Even if this magical not even experimental drug did anything to cure his mitochondrial disease the kid would still be little more than a vegetable relying on machines to do fundamental things like breathing. Now I am sorry but if you think allowing your child to suffer that makes you a caring wonderful parent then there is something wrong with you.

Oh and I see this sorry tale just took a new twist with people threatening medical staff and even posting negative online reviews of the hospital. Seriously people need to get some perspective here and stop hiding behind all this "if you aren't a parent you wouldn't understand" bullshit. NO ONE wants this child to die, the staff at the hospital don't want it and the courts don't want it. However there is not going to be a happy ending for this child the humane and loving thing to do is to let the child die peacefully.

 

[NervousXtian]

If my children were in this same state, I'd let them go peacefully.

I love my kids more than anything ever. I love them so much I'd never put them through this for my own selfish reasons.

We keep people alive for ourselves, not them. It's a horrible practice. It's been 11 months, he's not getting better.. and when this US doc doesn't work, the next quack with a master plan on something that's uncurable they'll cry once again to be given the time.

Let Charlie RIP already.

 

[TarNaru33]

Are you for real?

Everyone's lost someone dear to them, but under these circumstances? Their child? A person they've been planning to share their lives with until they depart and their child carries on their teachings and legacy? At that at 10 months?

Don't be ridiculous. I'm not a parent myself and I know how shitty that situation is for all involved

Just want to point out and agree with the other guy you are responding to. You don't need to be a parent to experience that form of attachment and making someone suffer just because you don't want to let them go is terrible.

So all the people trying to say "if you aren't a parent" needs to stop with the bullshit.

 

[D4Danger]

update: The parents have ended their legal fight so it doesn't look like anything else will happen

http://www.bbc.co.uk/news/uk-england-40708343

 

[ReplacementPelican]

Just saw the update on this. I'm glad the child will no longer have to suffer but feel awful for the parents.

Its a heartbreaking situation that I hope nobody finds themselves in.

 

[Deaf Spacker]

It's absolutely heartbreaking but at the same time it's the right decision.

 

[Earthbound64]

If my children were in this same state, I'd let them go peacefully.

I love my kids more than anything ever. I love them so much I'd never put them through this for my own selfish reasons.

We keep people alive for ourselves, not them. It's a horrible practice.

Pretty much this.
Torturing someone who you profess to care about is pretty frightening.

update: The parents have ended their legal fight so it doesn't look like anything else will happen

http://www.bbc.co.uk/news/uk-england-40708343

Good news.

 

[BigAl1992]

I was keeping track of this case for a few weeks now, and to be frank I think they should've let go of the boy a long time ago. It's clear that the Brain Damage alone was enough to prevent him from ever fully recover, and that treatment they keep talking about hasn't even entered Phase 1 of Clinical Trials (Read: Tests on Mice), so it would've been an entirely shot in the dark if the child even made any sort of recovery.

This is a sad case. I don't think anyone who works at GOSH, or any medical professional who got involved in this case wanted it to end like this, but at some point, they have to face facts, and the fact is Charlie Gard's Condition deteriorated so much in the intervening three moths that it's simply too late to do anything now. The family have my condolences and I don't like commentating about people in situations like this, but they have to let go of him. Prolonging it would only further his suffering and that's something I don't think anyone wants for him.

 

[Charles Brandon]

The real villains in this are:

a) the people threatening staff members of GOSH online and in person
b) public figures weighing in on the debate and enabling the parents in their understandable but irrational hopes.

 

[Charles Brandon]

this twitter account is a lot of fun

https://twitter.com/ClassySnobbb

sample

Gabrielle Seunagal‏ @ClassySnobbb 9m9 minutes ago
More
I hope @GreatOrmondSt goes out of business. I do. They're complicit. That's my honest take. If you don't like it, too bad. #CharlieGard

 

[Blue Lou]

The parents have withdrawn the request.

https://www.google.co.uk/amp/s/amp....ents-end-legal-fight-over-critically-ill-baby

 

[Wilsongt]

The entire case is very sad, for the parents and the baby. But if the baby isn't going to have any quality of life and will be dependent on machines, it's best just not to let him suffer...

 

[Beefy]

The parents have withdrawn the request.

https://www.google.co.uk/amp/s/amp....ents-end-legal-fight-over-critically-ill-baby

GOSH were right all along. Shame it had to go the way it went.

 

[Mr Swine]

GOSH were right all along. Shame it had to go the way it went.

Sadly people will hold GOSH accountable for Charlie's death. Just go out to twitter and hundreds if not thousands of people think that Charlie would have been cured if he got that treatment in the USA

 

[Beefy]

Sadly people will hold GOSH accountable for Charlie's death. Just go out to twitter and hundreds if not thousands of people think that Charlie would have been cured if he got that treatment in the USA

Look at Trump's tweet...

 

[kmag]

Sadly people will hold GOSH accountable for Charlie's death. Just go out to twitter and hundreds if not thousands of people think that Charlie would have been cured if he got that treatment in the USA

The whole thing has been a disgrace.

I get the parents clinging to any hope. But they've been used by the usual 'anti-establishment' muh freedom far right.

but fundamentally. The timeline goes like this

There's an extremely experimental treatment in the states which the parents want to try
The Doctors treating Charlie apply for an ethics board exemption to be allowed to try the treatment despite the low likelihood of success (notwithstanding the treatment is not a proposed cure)
Charlie's condition rapidly deteriorates to the point GOSH says there's no point now
Legal battle ensues.
The US doctor offering the treatment, agrees to the Judge's request to come over and examine Charlie and look at his medical records in detail (something which he hadn't yet done)
US Doctor upon examining Charlie indicates that GOSH are correct and treatment will offer no benefit.

When it comes out in the wash, it'll almost certainly be shown that Charlie's condition had deteriorated to the point where no further treatment was valid at exactly the point the doctors at GOSH said it did. I get the parents clinging to hope, but the whole furor about what medically seems to be a correct decision is so unseemly.

 

[Charles Brandon]

Throughout, his parents' hopes have been sustained by advice received from overseas.
Mitochondrial disorders comprise a specialised and small international field. The
experts in that field meet, collaborate and exchange ideas on a very regular basis and it
is that valued collaboration that allows progress to be made and patients to be provided
with the best possible care. Professor Hirano (”the Professor"), whose laboratory
research has an international reputation, is very well known to the experts at GOSH and
he communicated with them about NBT treatment for Charlie at the very end of
December. In January, GOSH invited the Professor to come and see Charlie. That
invitation remained open at all times but was not taken up until 18 July after being
extended, once again, this time by the Court.

9. In the months between January and July, the Professor provided written and oral
evidence for the best interests hearing in April and, after the Court decided that NBT
was not in Charlie's best interests, he went on to provide further written evidence for
the Court of Appeal and the Supreme Court. Most recently, on 6 July, he co-signed the
letter indicating that he had new information that changed the picture for Charlie, that
brought this case back before the High Court.

10. When the hospital was informed that the Professor had new laboratory findings causing
him to believe NBT would be more beneficial to Charlie than he had previously opined,
GOSH's hope for Charlie and his parents was that that optimism would be confirmed.
It was, therefore, with increasing surprise and disappointment that the hospital listened
to the Professor's fresh evidence to the Court. 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. 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. Devastatingly, the
information obtained since 13 July gives no cause for optimism. Rather, it confirms that
whilst NBT may well assist others in the future, it cannot and could not have assisted
Charlie.

not sure where this comes from but seems to be a good summary.

Edit: note the financial angle, there are whispers that the company the prof works for who owns the technology were perhaps motivated by something other than compassion.

 

[Preezy]

The high profile campaigning by the parents left me feeling a bit uncomfortable, there's a fine line between desperately seeking help and starting to play the media game, and they were right on the line in my opinion.

Ultimately though it's all just a shame, poor kid hasn't benefited from any of this noise and will suffer the same fate he was going to right from the off. The parents can't be blamed for wanting to hold on, but in the cold light of day his suffering should end.

 

[DBT85]

Glad this is finally over.

Expecting my first in 4 weeks and would never have let it get this far.

 

[Yeoman]

And there it is right there:

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.

Sums up everyone wrong with the healthcare system in America in a single sentence.

 

[Armaros]

And there it is right there:

Sums up everyone wrong with the healthcare system in America in a single sentence.

So a world renowned children's hospital had its name dragged though the mud because someone just had to try to sell their niche product and put it into the public eye...

jesus christ.

 

[LucidMomentum]

The whole thing has been a disgrace.

I get the parents clinging to any hope. But they've been used by the usual 'anti-establishment' muh freedom far right.

but fundamentally. The timeline goes like this

There's an extremely experimental treatment in the states which the parents want to try
The Doctors treating Charlie apply for an ethics board exemption to be allowed to try the treatment despite the low likelihood of success (notwithstanding the treatment is not a proposed cure)
Charlie's condition rapidly deteriorates to the point GOSH says there's no point now
Legal battle ensues.
The US doctor offering the treatment, agrees to the Judge's request to come over and examine Charlie and look at his medical records in detail (something which he hadn't yet done)
US Doctor upon examining Charlie indicates that GOSH are correct and treatment will offer no benefit.

When it comes out in the wash, it'll almost certainly be shown that Charlie's condition had deteriorated to the point where no further treatment was valid at exactly the point the doctors at GOSH said it did. I get the parents clinging to hope, but the whole furor about what medically seems to be a correct decision is so unseemly.

The high profile campaigning by the parents left me feeling a bit uncomfortable, there's a fine line between desperately seeking help and starting to play the media game, and they were right on the line in my opinion.

Ultimately though it's all just a shame, poor kid hasn't benefited from any of this noise and will suffer the same fate he was going to right from the off. The parents can't be blamed for wanting to hold on, but in the cold light of day his suffering should end.

And there it is right there:

Sums up everyone wrong with the healthcare system in America in a single sentence.

This sums it up for me pretty clearly.

This happens multiple times a day across the world. It's part of being a professional, ethical doctor.

Sometimes the parents / family want a doctor to try anything, and the doctor has to say "I'm sorry, it's beyond us now."

This time you had multiple people on all sides politicizing and attempting to profit from it, and it turned into an absolute shitshow.

It's one of those events that shows you how awful people can be about difficult situations, and that experts are experts for a reason.

 

[RedSparrows]

So a world renowned children's hospital had its name dragged though the mud because someone just had to try to sell their niche product and put it into the public eye...

jesus christ.

And meanwhile the right in the US wants Healthcare to fuck off and die, and wails about death panels and pro life... Add in death threats and you got a total clusterfuck of deluded/downright cynical bastards. Poor parents, poor healthcare profs, poor kid.

 

[Earthbound64]

The whole thing has been a disgrace.

I get the parents clinging to any hope. But they've been used by the usual 'anti-establishment' muh freedom far right.

"they've been used by"?
It sounds more like they are / they purposely made use of others to try to get what they wanted.

 

[Preezy]

Still at least the Pope offered his prayers, which (un)surprisingly has done sweet fuck all to help.

 

[Charles Brandon]

"they've been used by"?
It sounds more like they are / they purposely made use of others to try to get what they wanted.

I wouldn't say that. I'd say that in their understandable desperation they have latched onto any solution, no matter how unlikely, proffered by anyone. That desperation has been used as a platform by various people to further their own agenda:

- The Pope to promote the church's agenda on the sanctity of life above all other considerations

- The professor and the company that owns the IP of the the new treatment, to promote their product for financial gain.

- Donald Trump, I guess to promote US expertise and the benefits of the US healthcare system vs the issues with free healthcare systems to advance his own position on the same issue in the US.

- Other people in the US also using this as a proxy for the healthcare debate there.

- Pro-brexit morons who see this as another attack by 'the experts' on the common man.

 

[Guhnmystro]

Still at least the Pope offered his prayers, which (un)surprisingly has done sweet fuck all to help.

Shit, you're right, Should have brought him in for his medical opinion. Anti-religious people pick the weirdest stumps to stand on.

 

[Preezy]

Shit, you're right, Should have brought him in for his medical opinion. Anti-religious people pick the weirdest stumps to stand on.

Any opportunity to highlight the hypocrisy of religion

 

[Charles Brandon]

Shit, you're right, Should have brought him in for his medical opinion. .

Well he pretty much did offer a medical opinion, hence the opprobrium.

 

[theaface]

I feel awful for the family and hope they can grieve and heal in private. This was a no-win situation and should never have become the media circus that it was. Outlets like Sky News should (but won't) take a hard look at themselves and they say they sensationalised coverage of this poor boy's circumstances.

 

[krang]

This grabbed me more than I was expecting. My wife and I are the same ages as the parents, and their son is within a month of our youngest boy. All but for the roll of a dice, we are them.

Maybe he should have been given the opportunity of the treatment much sooner, but I don't think it's appropriate to talk about the rights and wrongs right now.

It's just incredibly sad, but there are two positive(ish) thoughts:

- I hope the parents are comforted by the fact that their son, with their help, has achieved an awful lot in his short life. The money and awareness raised will help other children for decades.

- I hope these two will eventually become parents again (either through birth or adoption), because they are amazing people.

 

[Echo chamber]

So far I have seen 3 types of morons

Relgious folk - Youre not god!!!! stop playing god oh wait forget that the doctors are the reason he is still alive.

people who read headlines only - Wait them dirty doctors and courts!!

The donald retards - combination of above plus pushing the narrative "socialist healthcare" dont work since americans can cure anything* and GREENCARD woooooo.

 

[Earthbound64]

positive(ish) thoughts:

- I hope the parents are comforted by the fact that their son, with their help, has achieved an awful lot in his short life. The money and awareness raised will help other children for decades.

...
Have you read this thread?...
Most of the "awareness" and "achievement" has been negative.

 

[Jezbollah]

Terrible but inevitable news. I just saw the statement by the parents, and it was heartbreaking.

It angers me though that the lawyer statement includes "the window of opportunity has been lost" - I doubt very much there was any window of opportunity in this case.

GSOH have been vindicated in this case, but they should have never been in a position where they have to go to the courts to show evidence of treatment in the first place.

And fuck anyone for trying to politicize this very sad story.

Glad this is finally over.

Expecting my first in 4 weeks and would never have let it get this far.

Congrats DBT

 

[CharmingCharlie]

This story was never going to have a happy ending. The best that can we hope for now is that Charlie passes away peacefully and with dignity (as should've happened months ago). The parents are not to blame for this, the hospital is not to blame for this and the courts are not to blame for this. It is just one of those cruel aspects of nature that happen.

However the opportunistic arseholes like Trump, The Pope, right wing US arseholes and this American doctor that has his fingers in the financial pie should all be having a good look at themselves tonight. But they won't because at the end of the day none of them gave a fuck about little Charlie Gard all they cared about was themselves and their bullshit agenda they wanted to push. Meanwhile they dragged a world renowned organisation that has saved and treated hundreds of thousands of children through the mud and attacked the hard working and dedicated staff.

 

[krang]

...
Have you read this thread?...
Most of the "awareness" and "achievement" has been negative.

GAF is GAF.

The achievement is in the money they raised which will now go to charity. The awareness is of this rare disease.

Don't belittle those.

 

[Demoskinos]

What I find most disturbing about this is that the parents kept tormenting him when it became clear that he was a goner. People don't even do that to animals. Why children?

Because hes their child.... would you not try every single thing you could find to possibly try to treat your child if they were in a bad spot? Like i think its pretty obvious.

 

[Earthbound64]

GAF is GAF.

So you haven't read the thread then.

Because I'm not talking about GAF.
I mean this:

http://www.gosh.nhs.uk/news/latest-...man-great-ormond-street-hospital-22-july-2017

However, in recent weeks the GOSH community has been subjected to a shocking and disgraceful tide of hostility and disturbance. Staff have received abuse both in the street and online. Thousands of abusive messages have been sent to doctors and nurses whose life's work is to care for sick children. Many of these messages are menacing, including death threats. Families have been harassed and discomforted while visiting their children, and we have received complaints of unacceptable behaviour even within the hospital itself.

Whatever the strong emotions raised by this case, there can be no excuse for patients and families to have their privacy and peace disturbed as they deal with their own often very stressful situations or for dedicated doctors and nurses to suffer this kind of abuse.

Great Ormond Street Hospital is in close contact with the Metropolitan Police and we will do everything possible to hold to account anybody who involved in this kind of deplorable behaviour.”

 

[krang]

So you haven't read the thread then.

Because I'm not talking about GAF.
I mean this:

http://www.gosh.nhs.uk/news/latest-...man-great-ormond-street-hospital-22-july-2017

However, in recent weeks the GOSH community has been subjected to a shocking and disgraceful tide of hostility and disturbance. Staff have received abuse both in the street and online. Thousands of abusive messages have been sent to doctors and nurses whose life's work is to care for sick children. Many of these messages are menacing, including death threats. Families have been harassed and discomforted while visiting their children, and we have received complaints of unacceptable behaviour even within the hospital itself.

Whatever the strong emotions raised by this case, there can be no excuse for patients and families to have their privacy and peace disturbed as they deal with their own often very stressful situations or for dedicated doctors and nurses to suffer this kind of abuse.

Great Ormond Street Hospital is in close contact with the Metropolitan Police and we will do everything possible to hold to account anybody who involved in this kind of deplorable behaviour.”

Assholes exist. Surprise! That's nothing to do with the actions of the parents.

The things they have done which are positive far outweigh that bullshit.

But people here are more keen to hunt for the negatives and enjoy an argument, no matter how inappropriate.

 

[Earthbound64]

Assholes exist. Surprise! That's nothing to do with the actions of the parents.

Again, you obviously haven't read the thread.
I give up, I'm not going to summarize the whole thread for you.

 

[holygeesus]

This is a big ass thread, so this has probably already been answered, but what makes this case any different to those that involve keeping alive people in a permanent vegetative state? I'm smack bang in the middle on this one, in that I can appreciate the stance of the hospital, to a degree, but what kind of precedent does it set, when doctors can pick or choose which lives should be forfeit? Or am I naive and this happens regularly already?

 

[Kadin]

This is a big ass thread, so this has probably already been answered, but what makes this case any different to those that involve keeping alive people in a permanent vegetative state? I'm smack bang in the middle on this one, in that I can appreciate the stance of the hospital, to a degree, but what kind of precedent does it set, when doctors can pick or choose which lives should be forfeit? Or am I naive and this happens regularly already?

From what I've gathered, it has to do with a very young child versus a person who has lived a decently long life. That's what I get from it and the opinions I seemed to have read.

As mentioned earlier in the thread, the Terri Shiavo case a while back is an example.

 

[krang]

Again, you obviously haven't read the thread.
I give up, I'm not going to summarize the whole thread for you.

I'll never understand the obsessive need to argue and hunt for the negative on here, even in the most inappropriate circumstances.