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Original poster

Charlie gard case thread 2

954 replies

Fancythat69 · 08/07/2017 20:22

The last thread is full, Not sure if another has been started.

Theres a CA rally at GOSH planned for tomorrow. What are these people on?

Charlie gard case thread 2
OP posts:
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16
JustChangingForThis · 09/07/2017 20:44

There is now a Twitter meme flying about saying -

"Socialized medicine death panel orders the KILLING of Charlie Gard" (their emphasis).

I am at a loss for words.

DarthMaiden · 09/07/2017 20:45

To be fair to his parents I think they have accepted "help" from anyone who they think can further their cause.

I'm not sure that they are thinking beyond that in terms of the credibility of anyone who is supporting their agenda and what their "angle" is and what "price" comes with that "support".

However the more of these people they surround themselves with, the more they are tied into wider issues (US pro life/tabloid click bait) that ultimately have a very different goal than doing what's best for their son.

MrGrumpy01 · 09/07/2017 20:47

Oh ok a little misleading then, so they don't change a fee but take commission.

Xeneth88 · 09/07/2017 20:47

I had all the empathy and feeling in the world for his parents but now, sadly, I think this has become a money making circus for them. They should be by his side, he quite clearly is close to death and they're out doing interviews/causing drama for other sick childrens families. Charlie is not the only ill child in that hospital, i feel so sorry for the others and their parents.

I understand the grief connie and chris are going through (have been there) but I can't understand their actions now, it's borderline negligent. Thank god for the doctors and nurses looking after Charlie. I hope tomorrow he is made a ward of the court and his life support is switched off asap. That poor poor child, clearly swollen and suffering. Charlie's Army should be ashamed, they won't remember him in a year. All social media huns wanting to be a hero.

Why are the people caring for Charlie being vilified when his parents seem to be there just for photo ops with the latest quack/religious nut.

Puzzledandpissedoff · 09/07/2017 20:47

Thanks once again Logical and Sparechange ... I'd noticed a mention of Featureworld, but hadn't quite realised what their role in this was

It's perhaps best that I don't say what I think about the parents choosing to involve them, as it would almost certainly be deleted Hmm

JustChangingForThis · 09/07/2017 20:50

Xeneth88

I see what you are saying and I am also concerned about the implicit message that parents who agree with medical opinion to withdraw life support are not "fighting" or "devoted" or whatever.

sodablackcurrant · 09/07/2017 20:50

My God.

The staff in GOSH must be feeling the awful vibes directed at them, it is awful stuff. And they are just doing their job for EVERY child tonight. Not just this one.

I am very annoyed at the hijack of such a great hospital and clinicians.

But they have kept their counsel and behaved with dignity in what must be a very difficult situation.

I am sure other parents going through similar must be aghast, but no, maybe they are in bits and not posting anything on the internet or getting dodgy pastors from the US of A to pray for them. Just dealing with a terrible situation out of the limelight. Tragic for everyone.

Disgusted from Tunbridge Wells.

Maudlinmaud · 09/07/2017 20:53

I'm really trying to keep an open mind here. Yes it would be nice for everyone not to be faced with the reality of a very sick child and for this family to accept what the medical experts have said but the family clearly disagree with what they have been told. They believe that their son should be given this treatment. Sadly the rest of us are led to believe this is not in his best interests. Something is badly badly wrong here and whatever way you approach this a child is or has been let down.
That wrong is either a mistake made by the hospital or the parents and it's very hard to decipher where the blame lies or even if there is any accountability.
You cannot question anyone's confusion here, can you?
But I have to admit the parents choice of support is concerning. It feels exploitive.

DarthMaiden · 09/07/2017 20:53

@Puzzledandpissedoff

Tbh I think it says more about the lack of ethics from FeatureWorld than it does about his parents.

They will be making lots of money from this, having preyed on two very emotionally compromised parents.

Same goes for the US Pastor.

11122aa · 09/07/2017 20:55

Death Panals is a well known saying of the right in the USA. Not surprised this case is being used to cut healthcare from many in the USA.

muckypup73 · 09/07/2017 20:56

I have just been reading that pastors page on facebook, hes doing all the advertising and they are still collecting money, what the hell will the pastor say when charlie dies???? oh it was gods will??? my god, seriously this is seriously pissing me off all this shit.

Xeneth88 · 09/07/2017 20:57

I see what you are saying and I am also concerned about the implicit message that parents who agree with medical opinion to withdraw life support are not "fighting" or "devoted" or whatever

I completely agree. It seems anyone who has made that heartbreaking decision is "less" of a parent and didn't "fight" enough. Well surely letting your very sick child pass away, peacefully is all the fight that's needed. Sometimes, sadly, there isn't anything that can be done and to have some dignity for the child is whats needed. Not posed photos with a quack, an army of blue hearted fb friends etc. Just quiet, family time and peace for that little child.

11122aa · 09/07/2017 20:59

I see through the Rally didn't get as many people as was expected by some.

sodablackcurrant · 09/07/2017 20:59

Xeneth,

I agree wholeheartedly with your very eloquent post.

muckypup73 · 09/07/2017 21:01

11122aa, I saw a picture of a woman with a couple of children next to a bagpiper saying there were crows behind her,there was nobody, I also saw around 3 at Blackpool tower that was it, maybe Charlies army as not as popular as they like to think.

3littlebadgers · 09/07/2017 21:02

The time they have spent protesting, and being interviewed, they won't ever get that back. They asked for more time, and they were given it despite everything. I so wish I could just urge them to forget everything and just be with him while they can.

I would give anything to be with my little angel now, to be back in the moment when I could hold her. Even getting her ready for her funeral, I look back on with such fondness because I was still able to care for her little body, wash her, dress her sing to her like a mother should. But they are wasting that time. They will struggle looking back at the time spent away from him. They should be making memories because as any parent in this position knows, all you have left is those previous few memories Sad

NotYoda · 09/07/2017 21:02

Xeneth

I think the vast majority of people probably agree with you/us. But are wary of entering into the whole debate, are not interested in social media

sodablackcurrant · 09/07/2017 21:03

3littlebadgers.

I don't know how you found the strength to post that, but it is so moving.

Xeneth88 · 09/07/2017 21:04

sodablackcurrant it probably wasn't very well worded, as I do completely feel for his parents, its just such an emotive subject and the latest picture of his little swollen face has got me a bit (alot).

Puzzledandpissedoff · 09/07/2017 21:04

Tbh I think it says more about the lack of ethics from FeatureWorld than it does about his parents ... Same goes for the US Pastor

To be fair you're probably right - I find you often are Smile

However while it pains me to say it, I'm beginning to wonder to what extent "the parents aren't thinking straight" can to be taken as a rationale for what seem increasingly unwise choices. I honestly used to think the same myself, but as I say, I'm not quite so sure now

3littlebadgers · 09/07/2017 21:04

I need to step away I'm finding this all too hard

sauvignonismydrug · 09/07/2017 21:05

I can't comment on Chris and Connie's behaviour, I don't think anyone can truly say how they would react to this situation unless you have been there yourself. I know that there are things I wish I had done differently in hindsight but my emotions were so chaotic even though I thought at the time I was acting perfectly reasonably.
What I will say though is that having a child with such a rare condition is a very lonely place. My son suffered from x-linked Myotubular myopathy and yet the hospital where he was diagnosed had never seen a case before. The hospital that we were transferred to had seen one case before my sons arrival. In many ways, I became the expert and I consulted with the charity supporting this condition before feeding back to the consultants. But the problem with such rare illnesses is that research outcomes are rare and the number of sufferers is extremely limited. This makes it easy to focus in on individuals, if there is one child who has survived with the condition then you pin all your hopes on a similar outcome.
You also lack the security of the 'group'. This sounds awful but with more common illnesses, you have access to a wealth of support, case stories and medical expertise. Rare conditions lack this and in addition to the complete terror that you feel about losing your child is the fear of making the wrong decision about a condition that even the experts have limited knowledge of.

Ellie56 · 09/07/2017 21:05

3littlebadgers your post is so moving. So sorry for your loss.

TheFairyCaravan · 09/07/2017 21:08

Flowers 3littlebadgers

Xeneth88 · 09/07/2017 21:11

NotYoda exactly. And social media isn't the place for his end days to be discussed. It hits home as a friend recently switched the life support off for her son. She's not taken this well, the comments etc shes seeing from Charlie's Army aren't helping. I think she did the best possible thing as a parent and let her little boy pass away very peacefully.