Charle Gard 21

[11122aa]

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

I wish them peace and some a sense of a life well lived when the dust has settled

Connie is saying her inbox is full with people asking to attend the funeral so can people inbox Laura or Chris

Looks like I was completely wrong then ...not for the first time

And I'd perhaps better not comment on the latest alleged media deal; it would be a shame to be banned after all this time

Sostenueto not necessarily. I went to a funeral recently where the family had arranged for a specially painted coffin and it was three weeks between the death and the funeral.
I wonder where they will be able to bury him without it becoming a shrine. Some of the comments on the CA page almost sound as though they have sanctified him, and C and C as his parents. Reminded me of the tribe who are alleged to worship Prince Philip.

I'm sorry, but to me a 'private funeral' means the attendees actually knew the deceased or their family. Putting something up on FB saying 'PM me if you want to come' doesn't sound all that private, does it? Although perhaps she's only responding with details to people they actually know.

you wouldnt need to say pm if u want to come to family and friends they would already know

Where has this accusation of selling exclusive rights to the funeral come from?

Internet people feeding off the death of a child are just ghouls and should be ashamed of themselves

Where has this accusation of selling exclusive rights to the funeral come from?

Private Eye.

Some of the CA posts are rather disturbing, I've never witnessed competitive grieving on this scale before.

There's info on the CA page about setting up the Charlie Gard Foundation which will help other children with mitochondrial disease/rare diseases and fund research.

It then goes on to say:
We also intend on becoming a hub of information for parents that may find themselves in a situation like ours. There needs to be more clarity for parents about parental rights when it comes to making life-saving decisions about their children. Access to medical treatment, and expert clinicians, should never be denied if funds are available. We will be looking at ways in which we can help make things clearer for families and hospitals alike.

I see my original post about the deals has been deleted.

Go to any Newsagent,
look at Private Eye number 1450 (its got the headline "World Takes Break")
Turn to page 8 "Street of Shame"
First story is about the issue under discussion on these threads.

Ellie
There's info on the CA page about setting up the Charlie Gard Foundation
But no mention of the words "registered charity" oddly

Presumably it is still at thee planning stage (Charlie Hard Foundation I mean).
Is the Private Eyed article legit, or just a comment in very poor taste

Android
In the previous issue they covered a fair bit about the financial dealings with Alison Smith-Squire and the Mail
In this one they cover the nature of the bidding war for articles.
Private Eye have a very good record of defending themselves in court.

I think the foundation with regard to research into rare diseases can only be good. Not so sure though about becoming a hub for parents in similar situations to their own. Surely they are likely to encourage other parents to take hospitals to Court?

There are already far, far too many "rare diseases" charities.
There are already multiple mito disease charities
OK they want something in his name but multiple charities just makes money for accountants like me without dealing with the disease.

Ta1kinPreece I agree, but most of these charities are founded to 'keep the memory alive'. I saw someone on television once asking people to band together because they could achieve more as one large charity (especially if funding research)but I don't think it made much difference.

Seriously doubt Private Eye would make a joke about this. They are very good at digging out little known information so reckon this will be the truth.

If this is true, I can take an educated guess on who is the driving force behind this.

I guess the thing to do is wait to see if what Private Eye have reported actually happens

And if it does, wait for any posts about it to be deleted

Here's an interesting piece, which may point at things to come - www.pressgazette.co.uk/charlie-gards-parents-to-complain-to-ipso-over-suns-lifting-of-their-exclusive-interview-with-daily-mail/

Some of Smith-Squire's comments are a little ironic.

thyre not going to let this parental rights things go are they what a waste of money

So selling it to the Mail is fine, but other papers lifting the story (as the Mail does from this site on a daily basis) was not

Still no sign of the "foundation" becoming a "charity"

Lots of the comments in the Mail story not realising that the money belongs to Connie and Chris - if they want to buy a villa in Spain with it, they are absolutely free to do so.

The second the money goes into a Charity, they lose control of it.

Just skimming the comments on the Mail story - I think a lot of donors to Charlie's army are going to be very upset when they realise that the money was not ringfenced in any way ...
the backlash may be very messy