Charlie Gard, the Pope, and Trump

[Jim_MDP]

Healthcare must be really cheap over there if a million is sufficient for a lifetime of care for a patient who can't even breathe.

I think they've got ~ $1.3 MM so far... which might get the better part of year in a NICU over here. They'll collect more before this is done and with NHS coverage hopefully the bulk will make it to research as they've said they'll do.

My first thought was that human research is severely restricted so this might provide a rare chance that otherwise wouldn't come around. If it offered any hope.

But... I can't find what the "experimental" treatment would entail, and the only reference to the doctors says the boy has already far passed the point where they've seen even minor improvements.

The parents are going to lose their son... and that horrible reality is being made worse by the circus that's building around the story.

The Pope and Trump should have stayed out of this one.

 

[Babbylonian]

The parents are going to lose their son... and that horrible reality is being made worse by the circus that's building around the story.

They've already lost their son (poor little dude never had a real shot). Their inability to recognize and accept that fact is as unfortunate as it is unsurprising.

The inability of Catholic dimwits and evil dimwits to keep their stupid mouths shut apart from offering condolences is nearly as unfortunate and even less surprising.

 

[Jim_MDP]

They've already lost their son (poor little dude never had a real shot). Their inability to recognize and accept that fact is as unfortunate as it is unsurprising.

The inability of Catholic dimwits and evil dimwits to keep their stupid mouths shut apart from offering condolences is nearly as unfortunate and even less surprising.

I considered changing my phrasing but I'm already trying to find my way out of this story.

The second comment is spot on as well.
Frankie and Trump should have offered their condolences, explained (briefly) why there was no treatment, and then shut up about it.

The argument might be moot now anyway... some reports say he can't be moved that far at this point.

 

[Information Analyst]

Healthcare must be really cheap over there if a million is sufficient for a lifetime of care for a patient who can't even breathe.

The money raised was to pay for an air ambulance to the United States and treatment there. The parents do not need to raise money for his NHS treatement thus far, as that's obviously already covered.

UK posters should note that the regular TV begging adverts for Great Ormond Street are for the charity, not the hospital directly, which as such vacuums up more money than all the other children's hopsital charities in the country put together.

 

[ponderingturtle]

Healthcare must be really cheap over there if a million is sufficient for a lifetime of care for a patient who can't even breathe.

Depends on the length of the lifetime. Even in the US that would likely be good for a few weeks.

 

[sylvan8798]

How many children will die today because of starvation, water borne diseases, malaria, war...?

 

[Arcade22]

I notice that there's been a serious lack of focus upon the fact that his brain damage won't be reversed even if this experimental treatment worked, something that's highly unlikely in-itself.

If it did work are they going to keep this vegetable on life support for the rest of their lives, as that would likely be the time when someone reasonable decided to pull the plug?

 

[Jim_MDP]

I notice that there's been a serious lack of focus upon the fact that his brain damage won't be reversed even if this experimental treatment worked, something that's highly unlikely in-itself.

If it did work are they going to keep this vegetable on life support for the rest of their lives, as that would likely be the time when someone reasonable decided to pull the plug?

There's vid today of the Mum's recent interview with her saying ~ "... all I'm asking for is 2 or 3 months. There's a chance he can be a normal, healthy boy. etc. etc."

That would be news to me. Anyone?

 

[Agatha]

I found this to be a carefully reasoned opinion: http://www.independent.co.uk/Voices..._1586314334713613&comment_id=1586314334713613

 

[Chris_Halkides]

both informative and compassionate

I found this to be a carefully reasoned opinion: http://www.independent.co.uk/Voices..._1586314334713613&comment_id=1586314334713613

Thank you; that is a thoughtful article. I glanced into this disease, and it appears to be an inability to produce deoxynucleoside triphosphates (which are precursors to DNA) in the mitochondria, which has its own chromosome. I have no idea whether or not the experimental treatment would work, but this article might be a place to start for those interested in pursuing this question.

 

[Mikemcc]

Even if it does it will still leave the poor lad severely brain and physically damaged. Some stories are saying that he is not displaying any pain, unfortunately I don't think he can. AFAIA he will never recover enough to be able to function and we cannot know the level of pain he is actually is in. That will not change with any treatment he receives.

As horrid as it sounds, there are many kids in the UK that could be supported better with the funds presently being spent to support this poor lad. By all means we should try to support kids like this lad, but we must not forget that we don't have infinite resources to do so. I truly wish we did. There are times when you have to let go, unfortunately for me I feel that this is one.

 

[Skeptic Ginger]

I found this to be a carefully reasoned opinion: http://www.independent.co.uk/Voices..._1586314334713613&comment_id=1586314334713613

I'm sorry but I just don't see anything new there. It's a summary of the different sides but it doesn't make the facts any less doubtful. So the issues are complex, that's a no brainer.

Possible miracle cure vs letting charlatans offer false hope.
Spend millions on a futile effort when the money could do more good.
Parental rights vs state intervening to speak for the child.
Taking parents' hope away vs being frank with them about the situation.
Damaging layer of social media and politics vs parents seeking help to fight the state.

And he sums it up thusly:

Who knows what the outcome will be? But everyone involved must learn from this, so that the Charlies of the future and their families can make the right decisions in the right ways, together with the medical teams caring for them, whatever those decisions may be.

Just what is the lesson here? I did not see anything except positions that can never move toward a consensus.

 

[Chris_Halkides]

communications between the parents and the hospital?

Skeptic Ginger,

Reading between the lines, the author is implying that there was a breakdown in communications between the parents and the hospital. Also, there have been one or more stories in the tabloid press that were a bit simplistic IMO, and the author may have been responding to these.

 

[BobTheCoward]

There is something really pretentious about thinking parents are better decision makers than a child advocate. In a very real sense, I'm willing to be my child's advocate but in no way am I qualified.

My sole reason I have that power is I had sex with my wife. It is absurd to think I can do a better job than someone who does it professionally.

 

[ponderingturtle]

Even if it does it will still leave the poor lad severely brain and physically damaged. Some stories are saying that he is not displaying any pain, unfortunately I don't think he can. AFAIA he will never recover enough to be able to function and we cannot know the level of pain he is actually is in. That will not change with any treatment he receives.

As horrid as it sounds, there are many kids in the UK that could be supported better with the funds presently being spent to support this poor lad. By all means we should try to support kids like this lad, but we must not forget that we don't have infinite resources to do so. I truly wish we did. There are times when you have to let go, unfortunately for me I feel that this is one.

But you have to understand the way healthcare is supposed to work you raise money for the flashy big cases like this one, and let the rest die.

 

[Beerina]

I notice that there's been a serious lack of focus upon the fact that his brain damage won't be reversed even if this experimental treatment worked, something that's highly unlikely in-itself.

If it did work are they going to keep this vegetable on life support for the rest of their lives, as that would likely be the time when someone reasonable decided to pull the plug?

I thought death panels didn't exist?

 

[ponderingturtle]

I thought death panels didn't exist?

Of course they do. See the death pannel that tried to kill this guy.

http://www.ocregister.com/2017/06/01/when-insurers-wont-pay-huntington-beach-man-sues-aetna-after-treatments-denied/

Private death panels run for a profit are morally good after all. He should die for the benefits that his death would provide future generations.

 

[Skeptic Ginger]

Skeptic Ginger,

Reading between the lines, the author is implying that there was a breakdown in communications between the parents and the hospital. Also, there have been one or more stories in the tabloid press that were a bit simplistic IMO, and the author may have been responding to these.

Not sure I understand your post exactly but having dealt with family members in denial about the prognosis or condition of their sick loved one, I can tell you that in some cases no amount of unbroken-down communication will have an effect.

 

[Skeptic Ginger]

Of course they do. See the death pannel that tried to kill this guy.

http://www.ocregister.com/2017/06/01/when-insurers-wont-pay-huntington-beach-man-sues-aetna-after-treatments-denied/

Private death panels run for a profit are morally good after all. He should die for the benefits that his death would provide future generations.

I thought the ACA stopped that sort of thing. Guess I was wrong.

 

[Aepervius]

Not sure I understand your post exactly but having dealt with family members in denial about the prognosis or condition of their sick loved one, I can tell you that in some cases no amount of unbroken-down communication will have an effect.

I have seen that first hand with my mother. Once I heard the amount of cancer marker in her blood, how her liver was, I knew the end was near. She died a bit less than 4-5 weeks after that IIRC. But in the mean time ? My siblings had difficulty to accept or understand the diagnosis. And my mother's sister and my father ? They refused to understand it. You could have drawn them diagram, or shown them a picture of the future with a time machine, they would have refused anyway.