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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

AIBU to think that thousands of people loving charlie and bradley is some what false.

999 replies

Lonelymummyof1 · 01/07/2017 07:29

I know exactly what It is like to have a poorly child same as hundreds more parents in the uk.
Set aside my belief that I believe that bradley has very little dignity and both him and charlie are now used as some weird sort of click bait.

The supporters I do not understand it ?

We love you, we are heart broken and we will miss you.

Now I get empathy but this is not empathy this is media posts just gone crazy to write the most heart breaking post they can.
I wish neither of these children would have to lose their life and can undetstand the parents pain just like the rest of the terminally ill children in this country.

You can feel sad that these things happen but this just seems weird and could not imagine allowing a nation of people watching my child pass away.

I mean how many of them 2 years from now will wake up on the morning of their anniversary and automatically remember them ?

OP posts:
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Maudlinmaud · 03/07/2017 17:41

Yes it was the guardian that put that spin on it for me too. Looking objectively at the tweet it reads more as support in light of the difficult circumstances.

DarthMaiden · 03/07/2017 17:51

Frankly I think part of the problem is that the vast majority of people believe that Charlie should be allowed to die peacefully and find the stance of CA unhelpful - but understandably have kept silent for fear of seeming to criticise his parents, who are obviously heartbroken.

Due to that, the noise of CA has grown unchecked and a number of people have supported this cause without understanding his condition or simply because they enjoy the righteous indignation.

That said, I think a tipping point has been reached and the public are now becoming more vocal in showing their distaste for the accusations being made towards GOSH, the protests and lies being perpetrated.

Trump won't have helped this and I think we will see more and more comments on SM in support of the decision to withdraw life support, despite its very sad conclusion.

LogicalPsycho · 03/07/2017 17:58

QuackPorridgeBacon I agree.

Charlie Gard's family on both sides should really now be trying to bring his parents back the inevitable reality of their situation.
While they are being forcefed a "where there's life there's hope" mantra by CA armchair activists, they are not accepting the inevitable- he isn't going to America, and he is going to die.

I do fear that in the future when Charlie is gone, they'll deeply regret sitting by his bedside with their faces in their phones, furiously Tweeting and Facebooking, instead of actually making the most of their sadly limited time with their Son.

Original poster
Lonelymummyof1 · 03/07/2017 18:19

So whats happens if by some reason charlie goes to america ?
If he passes away mid flight ?
Will it still be GOSH fault ?
Yep to them it will be.
GOSH can do no right now.

OP posts:
JaneEyre70 · 03/07/2017 18:43

I did question GOSH giving the family more time - I think there is never going to be a time where his parents will accept it, and the longer the family can batter the media with their frankly misguided madness, the worse it's going to be for them when the inevitable does come.

One thing that did surprise me today were the comments on the DM articles - it does seem that a lot more people have read the case history and gotten a better understanding. All the top comments were to let Charlie go with dignity.

eternalopt · 03/07/2017 18:48

This case is so sad. The media spin was appalling, so I looked up the actual court judgments to understand why the decisions that had been taken and been taken and they are such hard reading. The evidence that poor Charlie is suffering and in pain but unable to show any signs of this due to his condition is very strong. He has regular seizures, but only brain scans show this as he can't move. It's horrible to think his suffering is being prolonged, but it's equally sad that the parents have grasped onto fairly empty promise from a US doctor (who's never treated this condition before and admits he didn't know how severe his condition was) so firmly, they will always feel injustice and will never get over this. So many lives ruined.

LetsGoFlyAKiteee · 03/07/2017 18:59

I thought it was just me misreading what the Pope had actually said..glad to see not and it's been twisted as with everything else

Redglitter · 03/07/2017 19:08

Have just read some of the posts on FB.
Ffs you'd think GOSH were about to end the life of a child with a minor illness to read some of them.

Ironic that all the supporters who 'love' him are actually wanting to prolong his suffering

His family need to step back from this media frenzy and make the most of the time left. The hospital must be ready to withdraw life support imminently I would think

belmontian · 03/07/2017 19:20

The media spin was appalling, so I looked up the actual court judgments to understand why the decisions that had been taken and been taken and they are such hard reading.

I spent considerable time reading the lengthy court decision and what surprised me was that Charlie's parents from the outset agreed that his current state was not worth preserving/prolonging. This does not seem to be in line with the media reports.

Where they did differ is that they wanted him to be given a chance with the nucleoside bypass therapy, which the respected Dr from a highly respected institute told them that theoretically (although not clinically proven ) should slow down the rate of Charlie's deterioration. GOSH initially felt he could benefit from this therapy before later tests revealed he was in a state of terminal encephalopathy. The court paper acknowledged the very different climate towards pioneering treatment between US v UK and in many ways it is so sad that the parents were given this hope and have desperately clung on to it.

I only very briefly looked at CA FB page and they come across as stark raving mad. They don't have a clue about Charlie's medical condition and I fear they are not rational enough to even consider the facts.

reallyanotherone · 03/07/2017 19:31

The court paper acknowledged the very different climate towards pioneering treatment between US v UK and in many ways it is so sad that the parents were given this hope and have desperately clung on to it.

It differs in that US hospitals are likely to try any treatment requested if they get paid for it. Nhs trusts and dr's don't have that finanicial incentive so they make a decision based on the risk/benefit to the patient.

GOSH did consider the treatment, but ruled it out once Charlie got to the point where even if the treatment worked, and it halted the progress of his disease, his quality of life was so bad that withdrawal of treatment would still be the humane option.

I know americans are jumping on this case saying you should be allowed treatment if you can pay for it and not if you can't, but I for one am glad the nhs measures things up and acts in the best interest of the patient, not their own bank balance.

LetsGoFlyAKiteee · 03/07/2017 19:36

What's also ignored is they never said the treatment would be a cure. May extend his life a little if anything.

Though seeing as it's not been tested on mice why would you want to see a child who all the people on the group claim to love go through that..

converselybranded · 03/07/2017 20:44

Lonely well done for putting that on your FB, hopefully all the mean people will disappear and you will be left with true friends who support you Flowers.

Original poster
Lonelymummyof1 · 03/07/2017 20:48

Oh converesly i feel like you know me 😂😂😂

OP posts:
converselybranded · 03/07/2017 20:49

I promise I don't - hope that is a good thing! I did have babies at GOSH though 15 years ago so close to my heart. FB can be a bloody nightmare, not sure about Twatter, don't venture on there..

Original poster
Lonelymummyof1 · 03/07/2017 20:52

Oh haha thats good, i have never been able to work twitter so I am safe there 😂😂

OP posts:
SnootBoops · 03/07/2017 22:54

I'm so disturbed by the Trump love CA are spouting all over social media tonight. It's very unsettling. I hope Charlie's passing is peaceful and private and that his parents get the support they need.

NerrSnerr · 03/07/2017 22:58

I agree. I just hope that none of this means more appeals etc. The poor baby needs to be let go now. Prolonging things now is not going to achieve anything apart from make him suffer more.

stopfuckingshoutingatme · 03/07/2017 23:12

Just ignore them all

don't worry about GOSH either the thick as shit CA would never be the type to donate anyway and I would be very surprised if their support wanes . I mean that

Quack and lonely / remember these mad twats are a small and stupid minority

This too shall pass

I am sure his parent have their phones off and are cherishing their time

Flowers to all

Sleep well

Puzzledandpissedoff · 03/07/2017 23:14

I just hope that none of this means more appeals etc.

I take your point, but am not sure where any appeals could be made? After all this has already been through every possible court and it's not as if the basic position with the poor lad's condition has changed

All that seems to be happening now is that it's giving an outlet for the deranged and the opportunists ... time, surely, to let little Charlie go and hope and pray his parents get the support they'll need

LetsGoFlyAKiteee · 03/07/2017 23:20

The sad thing is Charlie has somewhat been lost in this..it's still about getting him to America and even if it doesn't work and he does die at least his parents will know they tried which in a way fair enough. In another way surley it matters if along the way he's suffered. Yet by the mob it doesn't.
It's not about being heard or who can get a tweet of someone famous..the Queen etc or who cares the most.

All about what is best for him..yet that's not being mentioned or thought about really. Long as they all get their 5 minutes of fame..mean who on earth takes credit for Trump?!

GinSoakedTwitchyPony · 03/07/2017 23:36

Puzzled, Trump's lawyer has tweeted that he's contacted his office in Strasbourg and that "there is another round of appeals available".

I thought the ECHR ruling was the end of the road, but he doesn't believe it is. He's a lawyer. I'm not.

I'm getting so angry about all of this - Charlie's welfare appears to have been forgotten.

Puzzledandpissedoff · 03/07/2017 23:39

Trump's lawyer has tweeted that he's contacted his office in Strasbourg and that "there is another round of appeals available"

Oh dear god Shock

I'm obviously not a lawyer and don't know either way, but can only hope he's wrong. Isn't anyone going to put Charlie first in all this?? Hmm

TheCraicDealer · 03/07/2017 23:49

Rather than convincing people that parents always know what's right for their own child and should be able to make decisions accordingly, this charade is just showing that sometimes they really, really don't. In those cases the state or courts or doctors or whoever need to reenforce the message that the child is the priority, not the parents.

I don't know how the parents justify all this, given their previous statements re. their son's quality of life and how untenable that was- and that was in April. Three months ago. Still pressing ahead, having been told by the US doctor that the treatment is highly unlikely to work given Charlie's decline (again, three months ago). How anyone who has read the judgements can think that any of this is the best thing for that wean is beyond me.

alcibiades · 03/07/2017 23:55

It seems to be a spiral thing, the family feeding the CA and the CA feeding the family, until it’s ended up as some kind of hysteria. I still think that the parents really don’t want to accept that it was their genes that gave Charlie this devastating condition so have desperately wanted to believe that he could somehow be saved. If the Charlie’s Army lot really wanted to support his parents, they’d be supporting them through what was always going to be the inevitable. Whereas they seem to pushing his parents into just prolonging the wait, and for Charlie it’s been going on for far longer than is humane.

(I did have some hope, after the US election, that Trump's stupidity was a bit of an act, but it seems he really is that stupid.)

Notknownatthisaddress · 04/07/2017 00:01

I agree with the OP, and any fundraising that raises money for one child doesn't sit well with me at all tbh. I had this woman waving a sponsorship form in my face the other week, for a sponsored FACEPAINT to raise money for her neighbour's son who has a 'condition' and wanted to go to Euro Disney.

I also dislike these gofundme pages too. There was a story in the news about a few months back, about this one couple with a baby who had downs, and they were robbed. They set up a gofundme page to replace £7,000 worth of stuff they had (supposedly) had stolen. The page reached just £220. So they started another page, (as well,) and that reached £211.

Compassion fatigue. People are sick of giving.

Also, in this case, I don't think people believed they had had so much stuff stolen, and didn't see why people should be paying for it to be replaced anyway. There were even suggestions that they weren't robbed at all.

I am also very uncomfortable with Charlie Gard's misery being prolonged...