Issues raised by the CG case 11

[Venusflytwat]

This is a thread following the legal and ethical questions raised by the recent court case involving Charlie Gard.

Please could we refrain from insulting or otherwise "bashing" his parents. It isn't in the spirit of Mumsnet and will get the threads removed.

Please could we also remember that at the heart of this case is a terminally ill baby and his heartbroken parents. There are those participating in and watching this thread for whom these issues are painful. Please let's try and be mindful of them when we post. This isn't a place for name calling or trivialising the very real pain they feel. Many parents of severely disabled children are on here.

Lastly, here are some hopefully useful reference points of facts surrounding the case.

13 July GOSH position statement on latest hearing (includes update on Charlie's condition):
http://www.gosh.nhs.uk/file/23611/download?token=aTPZchww

7 July GOSH statement on Charlie:
http://www.gosh.nhs.uk/news/latest-press-releases/latest-statement-charlie-gard

June 2017 Supreme Court decision:

May 2017 Court of Appeal Decision:
http://www.bailii.org/ew/cases/EWCA/Civ/2017/410.html

April 2017 High Court Decision:
http://www.bailii.org/ew/cases/EWHC/Fam/2017/972.html

GOSH FAQ page on Charlie:
http://www.gosh.nhs.uk/frequently-asked-questions-about-charlie-gard-court-case

Really
I too have only read media stories ofcourse. There were reports about one of the cardinals (presume he's like pope's spokesperson ) giving statements to media and saying Pope is following this closely etc. This is where I read about the Vatican passport as well.
www.google.co.uk/amp/www.telegraph.co.uk/news/2017/07/07/pope-considers-giving-charlie-gard-vatican-passport-overcome/amp/
Who knees how much of these news stories are true!
Apparently WH also called Dr Hirano (not sure what was said), but this is when he called GOSH again with claimed new evidence.

I think laura might be posting false hope because she knows there is no case.

Ahh now getting tweets back saying how this isn't true these pictures have been lifted from autism awareness 😡 xx

Which someone replied where's the proof..
Erm Google...

And then look for the photo where charlie looks like the michelin man, I tried to copy it but it diddnt work.

I agree he looks very unwell in recent photos - especially the ones the American pastor & the AUL attorney have posted which I believe were recent. He's got visible fluid retention- not a good sign.
I also wonder why family don't share any videos of him responding to their tickles and voice like they said he does....
I saw a brief video of CG 'opening his eyes' ON the roof top picnic. They were half open eyes not focusing on anything - the mum was trying to speak/ rub his chest etc - there was no visible response from the baby.

mommytomy
moving his fingers is irrelevant
if he cannot gain some sight he has no reason to move his limbs - even if he can
he is locked in a dark, silent world : unless that changes (and the deafness will not) then its all rather pointless

LetsGoFlyAKiteee, i have never ever ever known a facebook page such a Ca, it doesnt matter LetsGoFlyAKiteee, if you said it was green they would argue.

Mommytomylittlestars, thats sad, at the end of the day even when blind you can open your eyes anyway.

That photo of Charlie is heartbreaking.
Poor Charlie.

Ta1kinPeece, that is what I find most cruel, locked in an ugly cold dark world, not knowing whats going on,you might be in agony, you might not,but you cannot tell anyone about it, you may have a seisure again a scary thing again you cannot tell anyone,not being able to move or scream out in pain, just in a lonley dark world, can you actually imagine that????? its horrific,

I have just found the FB CA page you all keep mentioning - I am not a member but still could see the 'thunderclap lighting up blue' post & about 90 odd comments from people who really think the world is lighting up blue for Charlie
How do you even argue with these people!

LetsGoFlyAKiteee, i have never ever ever known a facebook page such a Ca, it doesnt matter LetsGoFlyAKiteee, if you said it was green they would argue.

I have- the Adam Johnson appeal FB page. That was the last and only time I've seen something like this. No free speech whatsoever, page was run by Johnson's sister and encouraged petition signing etc. Any comments slightly questioning anything were pounced on before deletion and blocking followed.

Threats of violence towards the girl involved were left up.

It attracted lots of perverts and strange obsessive types.

Someone FROM pisa says that they tried to get the tower lit for CG but couldn't and took a photo with baloons instead, yet further down CA are still "where's the proof" "why the scrutiny" etc…..

They don't even listen to each other...

muckypup73 hahah that's pretty much true! Person who posted it has said they're just going to ignore it..

Maybe they don't know that you can reverse search images?

FallenUnicorn I reported a blatant peadophile fishing on the Adam Johnson page, FB did nothing at all.

You are right, it was a similarly controlled page by a relative.

muckypup73 it's like that song One by Metalica

I think deaf-blind children can have a good life and contribute and communicate if they're "just" deaf blind, but CG has so much going on with him due to his disease

Oh had a look about that hospital the bambino gesu? It doesn;t sound very good.

en.wikipedia.org/wiki/Bambino_Gesù_Hospital

There's even a article from autism awareness week as well with different buildings...but nope that ain't proof..

@Muckypup
I hope for Charlie's sake his brain is damaged enough that he is beyond any feeling of pain.

apparenlty the proof that the landmarks lit up blue were done for GC is that they've also been shared on other CG facebook pages as individual pics not in that particular collage….

…..I just…..
………….y'can't even….
..there's no point in even trying any logic with these people...

I knew another group like it too, where a strange American mother sold things to pay for her daughter's treatment and wrote a book about her- but strangely the daughter was never heard from. And if anyone queried anything they were blocked. Some people I know with the same problem went to the german surgeon for treatment and did fundraisers. It s a gel they spray in your internal organs to try and stop internal scar tissue after surgery. But none of the surgeons here will use it.

There was a lot about fighting and being 'warriors' and those who didn;t were being 'victims' It was very strange. There are very strange groups on illness on FB.

I'm beginning to feel sorry now for Chris and Connie. The MDT meeting today must've been incredibly difficult for everyone involved. They must feel unable to make a decision to move towards comfort end of life care for Charlie for fear of the backlash from the "supportive CA" and the accusations of "giving up on Charlie" I'm just hopeful that they have access to the correct support and ongoing psychological support that they will need.

A couple of them are wising up -

*Are these images taken from stock photos of the Autism Awareness Month? If so, it is a real shame to risk discreditation of the cause with false claims.
www.autismspeaks.org/liub/what-liub
*

friendlysnakehere yes there were some awful ones weren't there? That's good you reported one, I saw one guy who kept banging on and on about how the age of consent should be 12. Ugh. Lot's of people blindly agreeing with him.
I reported someone threatening to kill the girl and same as with you, FB said it didn't violate their guidelines.