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.

They should not have asked for privacy then! Awareness of what? Raise money for what? Or just a position to sell a story later? Who knows? It is a mawkish intrusion though.

Await my deletion too!

bubbles, pissed I don't know, but I do know that many bereaved parents including friends of mine have gone public with similar details to the DM; I think it does fulfil a need in some people, whatever that might be. I couldn't imagine doing it, but not because of decorum

Re the cards: odd that they would still have been up in the first place, if born early August and admitted to GOSH at least two months later. Or was he in a local hospital prior to being referred to GOSH?

Ha, gofundme will NEVER give the money back, they make far too much off the donations and they even state "they can spend it on whatever they want, so more fool you for donating if they don't spend your money on the intended purpose". (Paraphrasing of course )
I also REALLY hope they don't spend it fighting for imaginary "rights of parents" Charlie's memory would be best served with donating it to fighting his disease
I'm still wondering about all the things in direct conflict with each other (hospital statements vs parents statements) is it possible it's all a misunderstanding vs someone being totally deluded/"having a different reality"/ etc. trying to avoid deletion lol. Just very

I think it is very clear. The parents were hooked into Dr Hirano and notion of hope. No-one else agreed with that course of action. Hence differing positions. The parents did not believe what they were told. Why would you think Charlie could ever be normal if given a chance? I feel they could not accept reality and that's why the position statements are so different.

Neither Chris nor Connie has been working for nearly a year. Perhaps they feel the money offered by the DM was worth it. I can't imagine they'd have been eligible for any benefits in the meantime.

And I keep seeing the figure of 1.3 million being bandied about. That was a couple of months ago, but I presume the fund remained open for a while since then? And wasn't there an option for Charlie's Army posters to send money via a link direct to Connie's bank account? I'm not sure if that was intended to add to the GoFundMe account or to assist with their living costs, which I imagine must have been quite high whilst he's been in hospital. (This is an observation, not a criticism, by the way).

I don't think they misunderstood Gosh. They profoundly disagreed with them! Was their version of Charlie's illness deluded? Yes. However they would not accept reason and sought to do what they could.

Connie would have had maternity pay I assume. So not without any money. Not sure about what the Post Office does about special leave where children are ill.

I keep seeing the figure of 1.3 million being bandied about. That was a couple of months ago, but I presume the fund remained open for a while since then?

The GoFundMe page is in fact still running

And wasn't there an option for Charlie's Army posters to send money via a link direct to Connie's bank account?

There was, yes - though I don't know if this particular option is still open or not

I hope they don't waste the money on a foundation fighting for 'parental rights' when they are the only parents who want these rights. I can't see much support (other than the ever decreasing BA). It would be more fitting in Charlie's memory to donate the money to mitochondrial disease research. I fear C&C are too stubborn to do so and will flitter the £ away somehow. Wonder what they have done with all the direct-to-bank-account donations?

I wouldn't say they're the only parents who want rights over their children - a quick nose at Facebook comments sections or the CA page show an alarming number of people saying they'd be reluctant to take their children to hospital because they'd be "handing them over to the state"/"losing our rights"

Faced with needing a hospital, they definitely would take their children. Also, CA is filled with US participants who have been purporting the 'children are the property of their parents' drivel.

This is spot on. blogs.lse.ac.uk/polis/2017/08/04/the-charlie-gard-twitterstorm-a-violent-and-negative-impact-new-research/

'Fame' (even dubious fame) is like a drug, you can become 'addicted'. Especially when it brings you a great deal of support and approval. C & C have just lost their child, their main reason for 'what they do'. I guess it's only normal (for lack of better word) that they turn to the public who supported them through their fight for continued support now. Someone posted on one of these threads earlier something along the lines of 'if they stop fighting, then what do they have?'.

I blame the publicist 100%. And the family and friends around them if they are not advising them to step back and heal. They need counseling to deal with this whole debacle and family and friends who are not afraid to speak the truth, even if it's hurtful.

I may be wrong of course, but afaik, you can't libel a company...? (Re the guardian article being a tad fictitious)

Is that not the whole reason people could say what they want about Gosh in the first place?

I may be wrong of course, but afaik, you can't libel a company...?

Trust me, you most definitely can - or rather, they can sue someone for doing so

I don't know if GOSH would want to pursue this route, or whether the fact they're not a business would make a difference, but regarding journalism there's a useful guide here about the new Defamation Act and how it affects them:

www.pressgazette.co.uk/six-things-all-journalists-need-to-know-about-the-defamation-act-2013-which-is-now-in-force/

Who appointed the publicist and allowed photos to be taken and released?

It's pretty crass of Featureworld woman to think it's appropriate to depict the parents as selling their story to the papers within a week of Charlie's death. I don't think she's really done them any favours.

People are still donating money to the original gofundme page, now in Charlie's memory .

Does anyone know if income from such donations has to be declared for tax purposes?

That DM article was just awful I am shocked and saddened by the continuation of all of this.

Octopus online advice suggests that GoFundMe donations are seen as personal gifts and not subject to tax, though as usual with these things there are endless caveats and recommendations about "taking advice" - something which GoFundMe themselves say they don't offer

I wonder, though, if HMRC would be prepared to go there even if they thought there was a liability. Granted they don't really need to worry about their reputation, but can you just imagine the outcry if they tried?

I just find it really sad that Charlie's parents allowed his final moments to be made public. It seems really tacky.

I am guessing we will get to see the funeral too. I just wish poor Charlie could have some peace and dignity

I just can't imagine in a million years how you would want a photographer and journalist whatever, anywhere near you as your child was about to die?

......and then sell the photos to the media