Charlie Gard

[poo at Paul's]

A sad case as always when a young kid is involved, but I a troubled by this case for several reasons.

What is the view of others? This child has no realistic chance does he? Should he not have been allowed to slip away with some dignity long ago?

It's very difficult to imagine what the parents must be going through, but I cant help but think this has been prolonged more than it should have.


Poor lad.

[poo at Paul's]

But is there a realistic chance of recovery? To any quality of life for this little lad? Has he not suffered severe brain damage?

[poo at Paul's]

Blue Cat said:

Actually the US Doctors are now saying that the experimental treatment will not help and that they were misled by the parents as to how bad the baby was.

It seems that the parents are just so desperate for a miracle, that they are grasping at anything.
UK Doctors feel the child is suffering and has no hope that is why they made the decision, i know who I believe

For more information
http://www.gosh.nhs.uk/frequently-asked-questions-...

Edited by Blue Cat on Monday 3rd July 17:24

This is the bit that worries me also. Huge sums of money raised, but was their any realistic hope of him receiving useful treatment? If not, how should those who contributed feel?

[poo at Paul's]

BlackLabel said:

poo at Paul's said:

This is the bit that worries me also. Huge sums of money raised, but was their any realistic hope of him receiving useful treatment? If not, how should those who contributed feel?

Re the money raised I hope they give it to Great Ormond Street but given the relations between the parents and the hospital that might be unrealistic. The parents themselves have said they'll set up some kind of charity.

bbc said:

"A few people have asked us what we'll do if we don't win the court case," Ms Yates said in a statement posted on the GoFundMe website used to fundraise for his treatment.
"We'd like to save other babies and children because these medications have been proven to work and we honestly have so much belief in them.
"If Charlie doesn't get this chance, we will make sure that other innocent babies and children will be saved", she said.
The post has since been deleted and GoFundMe said it would discuss with Charlie's parents what should happen to the monies raised.

http://www.bbc.co.uk/news/uk-england-london-40430188

May they even give it back? Parents running charities with millions of quid in them sits rather uneasy with me.

[poo at Paul's]

The longer this goes on, and so publicly, the more cynical I become of the motives behind it, sadly. If they return the cash, or donate it all and go back to their regular lives, I will "eat my cynicism", but if they start running a charity themselves and living off these good faith donations, it wont look good.

And in the background, this poor kid, who can lead no life of any real quality, seems to only have the professionalism of GOSH medics behind him.
it's well past his time now, poor lad.

[poo at Paul's]

jke11y said:

I have been thinking about this story a lot in the last few days, and hadn't spotted this thread until now to air some thoughts. I have also been discussing it with my other half as I wasn't sure if my (our) experience was over-ruling my normally fairly sensible mind.

A little under three years ago, I spent 2.5 weeks in GOSH with my first son; eventually he was diagnosed with a rare and terminal genetic disorder (Type1SMA for Wiccan). The care he received in GOSH was incredible, and the knowledge and skill that everyone we dealt with displayed still is in my thoughts every day.

We could have gone elsewhere for therapies/treatment/snakeoil (delete as you feel appropriate) that may have prolonged his life by days or weeks, but the absolute last thing that would have entered my mind would be to channel the little time we had in the direction these parents are displaying. A poster earlier quoted the mother as saying she didn't want him in pain, I felt exactly the same; any parent would - but surely anyone would take medical advice of a babies probable level of discomfort over their own desire to simply keep the child alive?

One thing I did come across a couple of times during the time we spent in hospital was a scumbag parent giving it the whole "she's my princess mate my little girl" mixed with aggression toward the medical staff. I don't even know what their situation was but it couldnt be any worse than mine at the time. I guess that whilst these things have every chance of happening to a level headed and intelligent person they also happen to people who are stupid, and these people are already pre-disposed to react in stupid ways. Add in more emotion than most people have ever experienced and you can see how situations escalate.

Apologies for the ramble if it doesn't make sense.

Makes perfect sense, mate. Sorry for your loss, too, cant be easy.

[poo at Paul's]

BlackLabel said:

I think it's a bit unfair to insinuate that this is all about money. They are just desperate parents who are blinded by their love for their sick child. And it seems they are being told a lot of half truths from so called experts in America.

We are saying we hope it is not, but an awful lot of money has bene donated for a trip / treatment that was seemingly never a possibility. So insinuations being fair or not, it's always going to be a nagging doubt.

There have been other higher profile cases with large cash donations provided for one purpose, and money spent on other things, we all know that.

[poo at Paul's]

g

kev1974 said:

BlackLabel said:

https://www.google.co.uk/amp/www.dailymail.co.uk/n...

What's interesting about that is the picture with the "reverend" inside the hospital ward. That's unusual to see an up to date picture, usually the pictures they use are from several months ago. In this pic Charlie doesn't look well

Sadly, not a lot of dignity in that pic, is there?


15 years ago, this poor kid would have been allowed to slip away quietly, and with dignity, and not be paraded around the press with this self promoting delusionist gurning with his ugly mug in the papers. But with the rise of the Go fundme pages, there's a bit too much money involved now and such people are able to perpetuate this nonsense.

Sad.

[poo at Paul's]

GreatGranny said:

The Reverend looks like he's attached himself to the parents when they are at their most vulnerable and are using them to spread his message.
One of the photos shows him talking to the father (who looks absolutely broken) or should I say he looks like he issuing orders and directions to him.
This one


It's becoming a circus now with the parents clinging to any hope no matter how small.
I don't blame them but it seems there are others who wish to take advantage for whatever reasons.

GOSH have acted with the utmost respect in this matter throughout.

I blame them now, for all this media circus and for prolonging this boy's suffering.
This child has rights. It's those rights ONLY that should be being focussed on. Not the parent's rights, not Trump or the Pope, or this religious loon.
In the face of all this medical evidence, (or even just what a well educated layman can find out), he has no chance. Let him go, with dignity.

[poo at Paul's]

HTP99 said:

Yep I think the same; they have been carried on such a huge wave of "support" and their plight is all around the world now being supported by some huge figures that they have got to a point which is massively out of their comfort zone where they feel they can't put a stop to it as it has gone way too far and they are just being dragged along.

The whole affair is very sad and I so feel for them, but the whole thing has just become too massive, one wonders how the parents will fair when the inevitable happens and then in a few weeks after, it is all forgotten about and this massive wave of support is no more and everyone has moved on to some other cause.

I cant help but think if they did not have a pot to piss in, this would have been over many weeks ago.

Too much money involved though, now.

[poo at Paul's]

The have a spokesman now who is saying the "UK system of government-run health care, the British judiciary is holding the baby “hostage". FFS.

Involving an innocent kid, parents all over the media, loads of money donated, family spokesman.......... what does this remind one of?


Beyond a joke now.

Edited by poo at Paul's on Thursday 13th July 09:32

[poo at Paul's]

PurpleTurtle said:

That said, I admire Charlie Gard's parents for doing everything they can for him. Unfortunately I don't think that even if this treatment 'works' per se the poor boy is going to have no quality of life. It must be staggeringly difficult for them.

Sadly, any sympathy I had has now gone and i just think they would do better to go and spend what little precious time they may have with their poor son.

It's a sad reality that hundreds of parents per year end up in similarly agonising predicaments with their kids each year, and yet they don't end up on such a media crusade, they deal with it generally in private and with dignity. GOSH deal with this all the time, they are best place to lead them through this ordeal, but instead they are criticising and saying the docs etc are wrong, inhumane etc.

It's thoroughly distasteful. The poor lad is pretty much gone, there is no way back for him, but has become a pawn in this ridiculous game.

Edited by poo at Paul's on Thursday 13th July 17:18

[poo at Paul's]

Too much money involved, said it all along.

[poo at Paul's]

The Mad Monk said:

poo at Paul's said:

I cant help but think if they did not have a pot to piss in, this would have been over many weeks ago.

Too much money involved though, now.

Who is paying for GOSHs legal costs?

Presume NHS. But that's not what I am getting at. The parents have £1.3M at their disposal raised on the back of this "treatment". If they are not allowed to do that, what happens to the cash?

The parents presumably haven't worked in months. Who is paying their rent and bills?

[poo at Paul's]

Ah the mother has "stormed" out of court today. Clearly the ratings were waivering, (as evidenced by this thread being on page 4!LOL)

FFS, just a bunch of jokers now.

[poo at Paul's]

bhstewie said:

It's wrong, you can't justify it, but then I think it's shameful and can't be justified how some people on here are rounding on the parents who, however misguided, are only acting in what they feel are the best interests of themselves.

FTFY

[poo at Paul's]

V8LM said:

Decision expected tomorrow, not today. Most of the media, all of Twitter, and those protesting forget that it was GOSH who instigated this latest hearing, not the parents (directly).

This will run for a long time. Either way, the claims of "if only" (quicker, sooner, blah, blah) will start.

One of the things I don't get is that the Columbia doctor was consulted before and he said that he didn't realize "how far gone" Charlie was. What is the new evidence?

If they don't like the answer, where will they storm out of next?


Wonder how much time they are actually spending with their dying son during all this?

[poo at Paul's]

PurpleTurtle said:

Lots of bandwagon-jumpers have chucked in a tenner under what now appear to be false pretences.

It was heartening to hear that they plan to use the money raised to help other children. One hopes that is by way of established, proven medicine.

Edited by PurpleTurtle on Tuesday 25th July 10:43

Are they not going to give it back then? Surely that's the answer based on the point you make in the prior sentence!

Is it possible they will give all the money back and he will go back to his job as a postman?

[poo at Paul's]

PurpleTurtle said:

poo at Paul's said:

PurpleTurtle said:

Lots of bandwagon-jumpers have chucked in a tenner under what now appear to be false pretences.

It was heartening to hear that they plan to use the money raised to help other children. One hopes that is by way of established, proven medicine.

Edited by PurpleTurtle on Tuesday 25th July 10:43

Are they not going to give it back then? Surely that's the answer based on the point you make in the prior sentence!

Is it possible they will give all the money back and he will go back to his job as a postman?

Dunno. From Chris Gard's statement, " it is now unfortunately too late for him but it’s not too late for others with this horrible disease and other diseases. We will continue to help and support families of ill children and try and make Charlie live on in the lives of others. We owe it to him to not let his life be in vain."

I took that to mean some sort of charity with what's left over.

I wonder if they will take an income from this charity?

[poo at Paul's]

Sadly, I can think of 1.3 million reasons they ignored or were advised to ignore GOSH. What is going to happen to this money now? It was such a key part of this story months ago, yet seems to have been forgotten about in recent weeks.
Do the terms of Gofundme or Just giving (not sure how they raised it) not stipulate what happens to it now? Surely if it was raised for one specific purpose and then not used for that purpose, it needs to be returned?