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

[Lonelymummyof1]

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 ?

Look, sorry, going back to the "must not bash the poor parents" theme -
This image is from the family's (new) Twitter account (they claim the other was being censored by Twitter), retweeting a bigoted and quite ridiculous meme posted by a notorious bigot.

They (the family/friends running the social media accounts) are most certainly initiating and contributing to the furore. I can't agree that it's not a valid part of this discussion.

I took a break for a few hours.
I return to the news that they're going to report GOSH to the NSPCC.
Aghast. Again.

Oh wow someone has written a poem/prayer for Charlie..no doubt there's more on there but wow....

Tonight as I lay down to sleep,
I pray our children's lives you'll keep.
We pray for Charlie everyday,
We pray that we will get our way.
Please get him to the states on time,
And mend this broken heart of mine,
For Charlie, he is not my son,
But yet I feel like I'm his mum
We wait and watch the clock tick by,
Why isn't our country on our side?,
All we ask is 8 short weeks,
To save our boy, or admit defeat
Please God, just let us try,
Please dont let our Charlie die.
Something good must come of this,
Keep fighting, Charlie, Connie & Chris
For we have every Faith in you,
So does the pope & trump too,
We are charlies army, ready to fight,
Morning, afternoon and night.
So let us go to war for you,
Watch what Charlies army do,
We will not stop, we won't let go,
We love you more than you'll ever know

@JaneAyre70

Charlie's Army have arranged a demo outside Downing Street tomorrow at 6pm. Be interesting to see how many of the 50,000+ members go.......there's already loads of "if i cud be there i wud hun".......

I wonder if it will be the same roaring success as the 'day of rage' from a few weeks ago! PMSL!

I think almost 11 twats with nothing better to do with their time attended that.

Ok - I'm going to say it.....

The money raised - and continues to be raised- makes me wonder exactly where it's going when the opportunity for it to be spent on Charlie is so remote.

I doubt it's going to GOSH.

I understand most donations have been directed not to a fund, but the mothers private bank account.

I'm happy to be flamed for being skeptical here and desperately hope that there have been assurances made as far as the fund is concerned that I have missed.

Charlie's Army is the Dunning Kruger effect in real time. These women are dangerous lunatics and it's depressing the amount of time and energy they are putting into encouraging grieving parents to not accept their appalling loss.

Because there is nothing anyone can do for this child that hasn't been done by the hospital and its staff.

Ah, the Dunning Kruger - yup, that about sums them up.

I had to google, link for anyone else not as knowledgeable

en.m.wikipedia.org/wiki/Dunning%E2%80%93Kruger_effect

I actually don't mind if some of the money goes on their expenses, I don't think they have misled anyone and they presumably haven't had an income for the best part of the year. It's hard to imagine them being able to work quickly after this either. When I try to imagine their situation my brain just hits a wall, it's in a realm of pain I can't (thank goodness) make any sense of. If any of their behaviour has been less than perfect then there but for the grace of God go any of us.

I think they will set up a charity. I wish like others that it could be part of an existing charity and hopefully not too focused on a single therapy but I couldn't blame them for wanting answers re their particular situation - presumably if they decided to try for another child they would want to know about gene therapy, early testing as well as nucleoside therapy.

It does make you wonder about these funding pages and how easy they are to set up. Surely the causes should be verified etc and registered as a charity before donations can start to roll in, especially when that money rolls in millions of pounds. It is quite odd to say the least that the money has gone into Mum's bank account......... and I hope they are made to be accountable for that money, especially when people gave their life savings. I appreciate they will have given jobs up/incurred expenses at the hospital but that isn't what the money was raised for.........

Quack and how fucking scared are these children going to be if, god forbid, they have to go into hospital, having heard that hospitals kill people?

That's exactly it.

My eldest had to see her sister in some horrible situations while she was in hospital. I'm thankful that somehow she isn't scared of hospitals and likes the play "heart surgery" and cut people open to ice them a new heart 🙈 Just to add, she knows not to do this when at school though.

Damaging children in any way shape or form is disgusting. I will go there and liken it to child abuse.

I agree - I think money spent on the parents to support them whilst caring for their child is perfectly reasonable.

To take a different tangent Madeline McGann's parents were vilified for using her fund to pay their mortgage payments when they were not working and devoted to their campaign to find her. I never thought their decision to do this was wrong.

I'm just bemused by the ongoing fundraising and genuinely interested in if there has been any information on where that money will be spent if it's not being used for treatment or supporting his parents to facilitate that.

Hopefully we all know that the EU has nothing to do with this? The ECHR is not a part of the EU, you can be a signatory without being an EU member state (eg Russia) and we were ourselves in the 50s and 60s. The EU court is the ECJ, who've had nothing to do with this.

I'm guessing the posters on this thread get that, but just in case anyone is reading who doesn't.

The own bank account thing isn't completely odd if you know the person that's donating I think. We raised a hefty amount of money for a young family member of mine to have an op at GOSH. People that knew his mum happily put into the bank account to avoid the charges (which work out quite high when you're raising a fair bit of money) but I can totally understand strangers not wanting to donate that way & using the just giving page instead. Also any money we raised from fundraisers went into the bank account rather than the just giving page for the same reason.

Ah I've driven myself mad over this today think. Apparently 'trump has good knowledge of the case & it wasn't just an off the cuff tweet' alrighty then folks, Trump knows best! Just as we've always known.

As sad as it is I'll second what some other people have said & kind of think GOSH should sort of say 'off you go then' & see how far they get, once they realise what is involved with trying to move him, trying to find someone to fly him to pissing America, & how Trump & his miracle cure work out. GOSH also have a duty of care to all of their other patients & right now I don't think it's fair on them with all of this shit storm going on around them, at the hospital & with the threat to Doctors, loss of donations etc

It is quite odd to say the least that the money has gone into Mum's bank account

She posted her personal PayPal details after the requested about (and then some) was raised for USA treatment.
The reason given was that amount she'd prefer to be paid directly now, as JustGiving take a small % of money raised as they are a business.
And if people give it straight to her, everything goes to Charlie. Her bank details are also underneath his Smell the Success Air Fresheners and iPhone cases.
Make of that what you will.

Tx for the clarification on the bank situation Jon

I may burst into flames if I read about the bloody MRI reports many more times.

Again, for the benefit of anyone from CA reading: THE MRI REPORTS "LEAKED" WERE SEEN BY THE COURT. If you would just read the damn judgements you would see them listed.

They say Charlie's brain is of normal appearance because, to an MRI scanner, they would have been. MRIs of the brain check for blood clots, haemorrhages, tumours- visible masses outside individual cells. Charlie does not have any of these things and so his MRI would be clear. Charlie brain is dying at a cellular level- INSIDE each cell. This does not show up on an MRI but it WOULD AND DID show up on numerous EEGS. His brain is not functioning at a level compatible with life. It is all there in the judgements, PLEASE read them. The "heightened white matter signal" referred to in the MRI is NOT a sign of improvement. It is a sign that his mitochondrial condition is worsening and that the nerve damage and dysfunction has increased. If you do t believe me google it. The medical facts are all out there for the taking.

And again, I and several others have tried to post this on the CA FB page but our posts have not been allowed. I have no idea why the admin don't want you to read the truth but it isn't fair.

Please read the court judgements. Please research these things for yourselves. You are not being given the truth.

They're not even clear on the distinction between mri and an mri report.

The keep saying they have the mri's, when they don't. All they have is the report.

I'll second what some other people have said & kind of think GOSH should sort of say 'off you go then' & see how far they get

I agree. But I'd like GOSH to also state that their release of him under the knowledge that CG is legally discharged from GOSH permanently. With no recourse to come back from the USA and set up residence in their ICU for another 8 months when the treatment doesn't work.

That might give them pause for thought when it sinks in there is literally nowhere in the UK qualified or legally willing to nurse him round the clock again on his return from the US.

I still don't know why they're still trying to raise money though...

Venus you could try shouting that to them til you're blue in the face, they absolutely will not have it. As far as they're concerned if you think his life support should be turned off, you're a disgusting heartless murderer & that is the end of that

JonSnow If today's article is accurate, around £1.8- £2million has been raised.

A hospital has also already offered to do the treatment FREE OF CHARGE.

I don't know either. I appreciate lost income and the raised living costs of having a very sick child in hospital in hospital long term, but do those costs really extend into the millions?

The degree to which GOSH is now being libelled by CA people is incredible. The conspiracy theories abound......

They are presumably hoping to bring him home and look after him long term. That would be a very costly undertaking.

Logical GOSH wouldn't, but wouldn't Birmingham or Alder Hey? Then they'd suffer the same treatment once it came to turning off his life support again I suppose, seeing as the medication might only prolong his little life for a short while anyway! All theoretical of course, I very much doubt any of this would happen.
I do wonder if once all this has settled down & they've had time to grieve, will they finally see that this wasn't in Charlies interest to drag it out like this, or will they forever think they were in the right

OMG at the bank info.

at the dunning kruger similarities! With those women!