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Original poster

Issues raised by the CG case 11

999 replies

Venusflytwat · 17/07/2017 18:30

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

OP posts:
Thread gallery
8
0nline · 19/07/2017 04:06

It's on his facebook too Maryz so that tweet was from the congressman.

Getting quite the reaction. Perhaps not the unified one confidently forecast.

Issues raised by the CG case 11
Sostenueto · 19/07/2017 04:53

According to the sun decision has been made against treatment.

oakleaffy · 19/07/2017 04:58

The pic of the little girl ''on the bike'' who features on the CA banners isn't riding it...she is perched on it, and her legs look incredibly slender..wonder if her legs have the power to pedal, or if the pic is misleading?

Sostenueto · 19/07/2017 05:22

Has this thread moved? Because I have to keep going back to thread 10 to get link, because its not appearing on any site on mumsnet? Has it been pulled?

NellieBuff · 19/07/2017 06:07

Sostenueto Sorry I'm rushing with himself and the not so little ones but the thread is still there. I always find it by clicking the Talk: I'm on link. Hope that helps.

Belindarocks · 19/07/2017 06:53

The latest pic in the DM is heartbreaking. Poor baby looks so bloated and ill. This has gone on far too long.

FluffyWhiteTowels · 19/07/2017 06:55

Slightly off the current topic but ..... if donations have been paid directly into CY account and not a set up charitable status will she have to pay tax as it's surely a form of 'income' if into her account?

Same as the 'donations' made for merchandise?

Sorry for derailing ...

MirandaWest · 19/07/2017 07:09

For the money that's been donated then I can't see there are any income tax implications as it's a gift.

Potentially there could be inheritance tax implications but only for the donor depending on how much the donation was for and if the donor dies within 7 years of making the donation.

With the donations for mechanise I'm not completely sure of the situation but there are probably others with a fuller understanding.

FluffyWhiteTowels · 19/07/2017 07:15

Thanks. I didn't think of it being treated as a gift. Thank you.

Hitmonlee · 19/07/2017 07:17

I know the discussion has moved on ( left my phone downstairs ) but I was the one who tweeted the website with the autism awareness images.

I've got replies telling me autistic people would be happy to share their blue light with Charlie!!!! WTF????

BlondieJ · 19/07/2017 07:22

I wonder if Connie thought that the meeting went well? That's why she's still on social media and being "optimistic" ? All of us have absolutely no idea what Dr Hirano has said to her, only she does, so her and her family might be preparing themselves for good news.

MirandaWest · 19/07/2017 07:24

It's very true that no one here knows what happened in the meeting.

CosmicStrider · 19/07/2017 07:24

I went on the CA page, and countered a couple of claims but have been blocked. I was not abusive or rude, just pointed out that if the facts were stuck to it would strength rather than derail the cause.

I am now blocked.

Ceto · 19/07/2017 07:41

That poor child looks even more bloated in the latest picture, which manifestly does not demonstrate that he can see. I'm increasingly horrified that he's just getting more and more ill, and must be suffering more and more, and the parents refuse to recognise it.

Ceto · 19/07/2017 07:43

But SMedia is running the show. I have ignored all that. So there is nothing else really until next week is there.

sodablack, manifestly that isn't the case. I ask again, do you feel the need to go onto other threads and tell people off for continuing to discuss the subject matter? Of course you're entitled to express a view, but why do you think that no-one else on this thread has that entitlement?

SocksBoatsAndQats · 19/07/2017 07:52

He does appear quite swollen, it's just such a horrible situation for all concerned. I realise it's been said before, but I do wonder how much the parents are placing their faith in this treatment to save their little boy.

A friend who is a nurse, said that often parents whose babies appeared well at birth struggle more than those whose babies were ill at birth. There is often the thought, but they were healthy etc.

WankYouForTheMusic · 19/07/2017 08:03

Perhaps posters who don't think this thread needs to be posted on at this point could vote with their feet and not, and let the rest of us make that call for ourselves. Telling everyone you think a discussion they're engaged in is pointless/pointless at this point borders on the rude.

muckypup73 · 19/07/2017 08:06

I am wondering if treatment has been refused and that is why the photo has been realsed???

muckypup73 · 19/07/2017 08:06

WankYouForTheMusic, I agree.

JaneEyre70 · 19/07/2017 08:10

I've just seen the latest photo the parents have released. I am nearly in tears because all I see is a child that is horribly swollen, and dead behind the eyes Sad. How can the parents not see that?? There is no way he will be released for treatment now, seeing how far he has deteriorated since the last photograph. Poor darling boy, this is inhuman for him.

oakleaffy · 19/07/2017 08:14

Cosmic Strider...Not at all surprised you were blocked :/
Any member of CA who 'dares' to question anything has the order of the boot.
A few days ago there was some real nastiness towards someone who questioned something about Charlie and there were some personal comments made about her looks!
Another member said why didn't you just block her?
and the reply [complete with sly eye emoji] was
I wanted some fun first

Someone else who had a legitimate question had her ''number of FB friends'' jeered about, plus her job! [works in catering].

The spats over the blue illuminations seem to be ongoing..fiddling while Rome burns.

Wh0Kn0wsWhereTheTimeGoes · 19/07/2017 08:31

Well it seems from recent posts towards Sodablackcurrant and others who have (politely) expressed distaste at aspects of these threads that CA are not the only ones giving the order of the boot.

DonutCone · 19/07/2017 08:34

The size of him in that last picture. How can they think everything is fine?

beekeeper17 · 19/07/2017 08:41

Seeing that latest photo has made me so sad, he looks so unwell. My baby has been sick the past few days and has screaming this morning and I couldn't help but be thankful that she can scream and can be comforted after seeing little Charlie's photo.

Of course I'm no expert but I can't see how in the world that little boy could make any meaningful recovery. I don't know how you would ever come to terms with that as a parent, and I get upset when I try to think about what I would do in that situation.

I do wonder if the parents think that there is a chance of Charlie being able to recover so much that he would be able to have some normal functions, or if they truly understand the reality of prolonging his life and what that really means for both Charlie and them.

Such a tragic situation. Initially I agreed with those who said that if there's a chance they should fight for it, but I'm sorry to say that I now feel the parents have become so focussed on fighting to keep him alive that they have lost sight of the overall situation and sadly all the amazing work GOSH have done and continue to do.

oakleaffy · 19/07/2017 08:45

Re.Charlie's physical appearance, a friend who isn't following the case was shocked at the latest pictures , as was I.
We are bombarded with images of a much younger Charlie, where he looks just like any other baby, but with a ventilator.
The latest pics where the sparkle has gone from his eyes , with the tissue fluid swelling his poor face and body are disturbing to see .

I hope Hirano will be thinking only of Charlie and not his own chance of having a subject to trial the new treatment on.

From a research point of view, Charlie could be a valuable subject , but Charlie's needs are paramount..just hope the Judge makes the most humane decision for the long term benefit of Charlie.

GOSH have no reason to ''lie'' about Charlie's parlous state.there is no 'face saving' for them to do..

At least now Hirano has examined Charlie, seen all the relevant patient notes, and who knows what Hirano said?

It is highly unlikely any newspaper 'knows' for certain what GOSH's opinion currently is after Hirano's visit ..it is just speculation.