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Original poster

Charle Gard 21

403 replies

11122aa · 01/08/2017 12:03

While discussion is almost over I have set up this thread incase anyone wants to post any comments to posts in the previous thread.

OP posts:
Dustbunny1900 · 05/08/2017 01:14

I thought their charity was for funding more research for mito diseases? But the DM article made it sound like it will be about parents getting their way (idk how else to put it)
I'm glad they were able to utilize the cold cot and bring him home that way. As much as their "parental rights" talk sets my teeth on edge, it was a heartbreaking read , today must have been very hard for them.
Interesting how they say hirano had no monetary interests and that he was never invited in January. .

MirandaWest · 05/08/2017 06:18

I've read the Daily Mail article too. I'm glad they were able to take him home in a cuddle cot.
I felt the language was very emotive and some of it seemed unlikely (the cards still being up at home etc) but seems there is probably poetic licence. Also unsure how the funds raised will be spent but not really my business I suppose.

Sostenueto · 05/08/2017 06:37

I would not never give to a fund that would strip children if their rights in order to give parents more rights. IMO that is an absolute insult to Charlie's memory.

LetZygonsbeZygones · 05/08/2017 09:13

Have been reading most of these threads but not commented. The DM piece today surprised me as the Gard's had said they just wanted to take Charlie home with no media, court cases etc etc. And now there's this piece sharing the 'private' moments they fought so hard to have. Seems at odds with what they said they wanted.

Nanasueathome · 05/08/2017 09:25

How can they be 'private moments' with posed shots and camera at the ready?
All pictures are credited to Featureworld so can only assume they are being 'sold' to the media

GriefLeavesItsMark · 05/08/2017 09:42

The article was awful, but featuresworld woman must be aware that she has a limited time to sell the stories; already hundreds of people have left the CA Facebook page and she must be desperate to sustain the momentum

The next, and probably last, bite of the cherry is the funeral. After that? a rushed out book and attempt to televise 'Charlie's Story'? A few interviews promoting 'Charlie's charity', a 'one year since Charlie's death'' interview in the DM and a down market magazine?. All to diminishing interest.

The parents are too ordinary and uninteresting to warrant much attention on their own.

thatdearoctopus · 05/08/2017 09:56

I find it quite extraordinary that neither one of them had set foot in their own home for 9 and a half months??!! Surely one or other would have nipped back to collect stuff/do bits and pieces there for a couple of hours? SW London isn't that far from GOSH, and it wasn't as if they never left Charlie's side.

Thymeout · 05/08/2017 10:15

Weewitch's link to the US journal is interesting. The author of the blog says that the GOSH Ethics Cttee advised against ventilation in mid-November after abnormalities were found in Charlie's kidneys and heart. This was post-diagnosis but pre-fits.

I'd sometimes thought that things would have been much easier if he had never been put on life support in the first place, but had assumed he was ventilated before his diagnosis was known.

Can anyone shed any light on this?

Thymeout · 05/08/2017 10:19

Is it now solely up to CG how the donations are spent? There must be some people who gave money, thinking it would be used to send a sick child to the USA for treatment unavailable here, who would not sign up to its use for an entirely different purpose that they didn't agree with.

LittleBearPad · 05/08/2017 10:22

I find it quite extraordinary that neither one of them had set foot in their own home for 9 and a half months??!

Exactly. It makes no sense at all

GriefLeavesItsMark · 05/08/2017 10:23

The dm article also states they have never spoken badly of GOSH. Which is strange, because in a DM article, dated 29 may, and on Feature world woman's website, the accuse GOSH doctors of being inhumane and state their son is been virtually held a prisoner.

NormaSmuff · 05/08/2017 10:28

The stalemate threw into sharp focus how morally tangled and ultimately fragile are the rights of parents over the fate of their children when pitched against the might of the State.

That is appalling journalism, from the Mail linked to earlier.

LetZygonsbeZygones · 05/08/2017 10:47

The mail piece is what I'd expect. Emotive, probably innacurate and a rehashing of whole saga in order to fill up space. But the Gards could have said no more press and that would be it. They wanted privacy but then this is the polar opposite. Yes there will be more of same at Charlie's funeral and perhaps a book. So his whole life and death will have been a media bonanza :(

hackmum · 05/08/2017 10:52

Maryz: "I might be a cynical old cow, but I don't think a GOSH worker wrote that. I think the first one was written by a bad reporter with an imagination, and the second one is an even worse reporter writing a precis of the first one."

That's worse than cynicism - that's libel. Of course a GOSH worker wrote that. Are you seriously suggesting a Guardian journalist made the whole thing up and the Guardian published it under the false pretext that it was by a member of GOSH staff? That's an extraordinary accusation. The Guardian makes mistakes, as all papers do, but it would never do something like that.

JaneEyre70 · 05/08/2017 11:01

The only heartening thing about the DM article is the comments - that this should very much have remained private. There is a very fine line between sympathy and backlash that these two are going to have to tread. I find it very upsetting that Charlie's last hours weren't private. He deserved better IMO Sad

Looby4 · 05/08/2017 11:07

The purpose of the Go Fund me funds was to take CG to the USA for treatment. I think Go Fund me should now return it all to the donors. Then If they wish to donate to the new foundation, once registered and the charitable objects have been approved by the Charities Commission, that will allow them to give through the registered charity, with the accountability and protection that brings, and other advantages such as gift aid.

Thymeout · 05/08/2017 11:13

Alison Smith-Squire is the journalistic equivalent of an ambulance-chaser no-win, no-fee lawyer. Google her. No fees to clients. She earns her money by selling photos and interviews to newspapers through her company Featureworld. The Mail On-line is even worse than the paper version for fact-checking.

Still, at least the comments and green arrows seem still to be in favour of GOSH and the judiciary on the children's rights aspect.

BubblesBuddy · 05/08/2017 11:16

I am sure the Guardian won't be too bothered about musings on here! It's hardly the biggest insult in the world!

I have a nasty suspicion that this will be dragged out in the media because of the money involved and what it may be spent on. There are several stories that will play out in the future and there is money to be made! C and C may wish to investigate how they can safely be parents in the future. Their lives will feel pretty empty now, so carrying on the parental rights fight may seem attractive. There will be offers to buy their story.

They could stop all such "spokeswoman" articles if they wanted to, but it seems they don't want to. No doubt the cards were put back up or they were get well type cards. It is all manipulated so just take it with a pinch of salt. In court they were highly critical of Gosh medics and their position and that is pretty well documented in tweets and court reporting. Additionally it was not, I think, a Gosh Dr that emailed "spanner in the works". I think it was possibly the medic from Newcastle but I could be wrong.

I actually do not agree the law is a mess in this area. The needs of the child come first. People can disagree with that but the law is clear. Parents do not have ultimate "rights" because a child is not a possession. They are a separate human being and that is what is enshrined in law.

If people give money to a cause, they have given the money and effectively lose control over it. This was not a charity with defined objectives lodged with the Charities Commission.

GherkinSnatch · 05/08/2017 12:39

It's just a bloody great mess, really. I read the position statements and the blogs etc and I just can't fathom how the family legal team remained so insistent that their take was correct. There's a direct conflict when they say things like Dr Hirano said that treatment would be effective and there was a near 100% chance of it crossing the BBB and then he guardian and GOSH statements to the contrary, with quotes from Dr H to support.

And yes, the DM article is awful. Poor child removed of his privacy even in death.

Thymeout · 05/08/2017 13:23

Gherkin - Yes and it seemed as if Hirano changed his position, or his estimate of the benefits of the treatment to Charlie, after the intervention of Trump and Congress. That may just be a coincidence, or a misapprehension by C&G, but it did seem odd at the time. just plucking figures from the air. According to the blog, they hadn't managed to show any benefit to Charlie's condition even theoretically in the lab.

I don't think he was taking the idea of treating Charlie seriously until others intervened. He made no effort to follow up overtures from GOSH and I think this was before the fits, showing the brain damage, which ruled out the advantages any minor muscle improvement.

Ellie56 · 05/08/2017 13:24

Poor child removed of his privacy even in death.

The previous 6-7 months of poor Charlie's prolonged death was played out in the media so I suppose it was inevitable that the last few hours would also be made public.

BubblesBuddy · 05/08/2017 13:30

Do you think the parents would have listened to a legal team that said they were wrong? I am sure they would have been looking for anyone who could represent their view and they had a right to do this, however misguided it feels given the evidence. They didn't see it that way and believed they had rights. Of course it was a slim case but as they were not paying, was there any incentive to stop when they would not see any other point of view? The barristers tried to put a case forward to represent their clients. As the court cases were permitted, there were questions to be addressed even though there was only ever going to be one outcome.

Puzzledandpissedoff · 05/08/2017 13:31

The only heartening thing about the DM article is the comments - that this should very much have remained private

Indeed Sad In particular I'm not sure why the parents wished us to know about Chris laying his head on Charlie's chest to hear his last heartbeats, precisely how long he took to die and all the rest; personally I'd have considered that best not publicised, but of course we're all different

Nor does it seem entirely fair laying all the blame on the ghastly Featuresworld woman for the piece; the family could have prevented this intrusion at such a time, but chose not to ... and anything else we are, of course, not allowed to say

unbuckle · 05/08/2017 13:43

On the article - I'd read it and found it very moving. Katie Gollop RT it so I would expect it is legitimate. The DM one does seem to have poetic licence but if the parents are looking to raise as much money and/or awareness as possible then i can see why they might consent to the interview.

Puzzledandpissedoff · 05/08/2017 13:51

if the parents are looking to raise as much money and/or awareness as possible then i can see why they might consent to the interview

No doubt, but given the colossal sum they appear to have raised already, was it really worth trading such intimate details of his death for a bit more? Admittedly I'm an old gimmer, but I recall a time when the word "decorum" was more widely used

Awaits deletion ...