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 ?

The people on Charlie's Army Facebook page seem to be completely deluded and unhinged. I dread to think what will happen when Charlie's life support is eventually switched off.

This 100%. They are practically frothing at the mouth now and it's distasteful in the extreme.
They are off to Buckingham Palace to protest now? With copies of this MRI scan that apparently proves Charlie isn't brain damaged. The whole GOSH conspiracy theory is just disgusting IMO. Particularly the way the hospital is being attacked by CA.
Also I can't stand the way they keep saying "If Charlie is still fighting, we're still fighting". Charlie isn't fighting, the poor sweet boy, he is merely existing, being kept alive by a machine, and most likely suffering. The situation is absolutely, utterly heartbreaking, and I cannot imagine the pain his parents are going through, but the emotional leeches on the CA Facebook page aren't helping anything. They are whipping themselves up into a rabid frenzy, without seeming to understand any of the actual facts about Charlie's condition or the legal standpoint.

Ultimately a baby is going to die, which is the most awful, awful thing and my thoughts are firmly with his parents at this tragic time.

I agree with you OP.

The social media frenzy is decidedly unhelpful.

The targeting of the hospital is reprehensible.

I sympathise utterly with the parents, but find the responses/posts/accusations of some of their online "supporters" bewildering in the extreme and often massively ill informed.

YANBU OP.

Something that I'm uncomfortable with regarding the support surrounding Charlie Gard is people showing support with slogans like 'je suis Charlie Gard'.

It feels inappropriate - I think that it's partly due to the fact that it's lifted directly from the support slogan that was used after the Charlie Hebdo and Hyper Casher murders in 2015.

This thing with the MRI scans is baffling. Is it being suggested that no one involved had taken the information into account? And how do people know what they mean?

I've read the MRI report that Charlie's Army are banging on about on FB. I used to work in radiology so understand some of the terminology.

First off, it says 'comparison is made with the previous scan of ....' which means they won't reiterate what was said on the previous scan, which conveniently they don't seem to be posting pictures of.

Secondly, there was a change but the radiologist didn't know how significant this was, so if the radiologist doesn't know how does Joe Public know?

Thirdly it says there are no other new findings. Again, without knowing what the previous report says we can't know anything about his condition, other than it hasn't significantly deteriorated since his last scan (with the exception of the previously mentioned change).

Fourthly, I believe I read this scan was from last year so is fairly irrelevant now anyway I imagine.

There's talk of a demonstration outside Buckingham Palace tomorrow.

This must be so heartbreaking for his parents, but surely enough is enough?

The people on Charlie's Army Facebook page seem to be completely deluded and unhinged. I dread to think what will happen when Charlie's life support is eventually switched off.

They'll continue their competition to be the most heartbroken for a couple of days, and then forget all about him.

The protest tomorrow seems to ve saying that the information in the MRI scans wasn't used in the court cases. Having read the full judgements this isn't the case. And also the MRI in January was done in preparation for Charlie having the nucleoside therapy. But then his condition became worse. So however he was at the beginning of January isn't relevant anyway.

And there's going to be a protest tomorrow outside Buckingham Palace (at least not GOSH) to show these MRI scans because it's new evidence. I find it very odd.

I tried to post this into Charlie's Army but the moderators didn't approve it, so I'm posting it here instead. The lack of understanding makes me sad but to deliberately block it makes me angry.

"I have spent a long time wondering whether to post this. I think it will probably be deleted but I beg you to read it before it is.

The MRI scans were presented in court. If you read the court judgement they are clearly referred to in there, I have posted the link to the judgement further down.

I can understand how the MRI reads if you haven't been trained in medicine or imaging at all, and where this misunderstanding comes from. In the instance of brain damage, MRIs look for damage like tumours, or blood clots, or haemorrhages. This is not the sort of brain damage Charlie has. Charlie's brain FUNCTION is damaged at a cellular level. The cells cannot produce the energy to function, because they do not have enough mitochondria. They have no energy and so they cannot function. You would not see this on an MRI. You WOULD see this on other studies such as EEGs. These have been repeatedly done on Charlie and show extensive encephalopathy- this means extensive damage and dysfunction to the function of his brain. Again, I repeat: you would not see this on an MRI.

Please take the time to read the actual court judgement. I have provided the link here, it is all in there. The MRIs you want to wave WERE seen by the court, they are referred to in there. They were not suppressed. Please also take note of how many different hospitals were asked by the court for their advice, both in the UK and abroad. They ALL agree with GOSH's assessment of Charlie's condition. This decision was not informed by GOSH alone.

Charlie's illness is a terrible, cruel tragedy. But clinging to false internet rumours doesn't help him or his poor parents now. Please take a few moments to read the full facts for yourself before taking action based on things which are simply not true, however well intentioned.

I pray nothing but peace and love and light for Charlie and his family tonight and in the coming days."

www.bailii.org/ew/cases/EWHC/Fam/2017/972.html

Notes:
* Brain Activity
* 

Dr. B confirmed that, whilst Charlie is not brain dead, he is persistently encephalopathic. In other words, there are no usual signs of normal brain activities such as responsiveness, interaction or crying. Dr. B confirmed that this is supported by repeated electrical tests in the form of EEGs. 

Dr. B explained in his oral evidence that, even before Charlie began to suffer from seizures on 15th December 2016, the clinical consensus was that his quality of life was so poor that he should not be subject to long term ventilation, resulting in the advice of the Ethics Committee in November 2016 not to offer Charlie a tracheostomy. Dr. B said that, since that time, Charlie has suffered significant deterioration in brain function evidenced by the development of persistent seizures. 

The court has also been provided with a letter from Dr. E, Consultant and Senior Lecturer in Paediatric Neurology at the Newcastle Upon Tyne NHS Foundation Trust. Dr. E specialises in rare mitochondrial disorders and is regarded as a world expert in the subject. He referred, in particular, to the fact that Charlie has developed an epileptic encephalopathy, which has been detailed on several EEGs, some of which have been prolonged recordings capturing a wealth of neurophysiological data on Charlie whilst awake and asleep as well as during seizures. Dr. E said this:

1. 

"Indeed, the most recent EEG performed on 10th January 2017 was very similar to that recorded in December 2016 and which was indicative of a severe epileptic encephalopathy with frequent sub-clinical seizure activity. Subsequent to Charlie's initial cranial MRI scan performed on 7th October 2016, he has had two further scans on 19th October and 6th January 2017. The most recent of these does not show any major pathology, but does reveal some subtle increased signal in the subcortical white matter of the occipital lobes. This would be a typical finding in patients with mitochondrial DNA depletion syndrome."


Great post Venus, it's sad (and very telling) that CA blocked it.

Thank you Venus.

The whole charade is sickening. Thick people being whipped up into a frenzy.

And the reality is, once these poor children have died, and we've had more emotional outpouring over intrusive photos of tiny coffins, give it a couple of days and most of the thick idiots won't even remember who or what they were protesting about.

Will they set up a direct debit to (quietly but consistently) help fund the charities which research these conditions? Will they read up about neuroblastoma and mitochondrial conditions to inform themselves of current thinking?

Will they fuck.

They're spamming every group about this.

While I pity Charlie's parents I'm past the point of respecting them.
They are leading those pack of dogs and they to are responsible for what they say and do. They've never once defended GOSH instead they feed the attacks with soppy videos and messages of despair.
They have turned their baby into a circus.

Thank you for that Venus. It's really preyed on my mind this weekend. I feel so so sad for his parents, knowing that this weekend will destroy them, but there's an even stronger feeling of unease knowing that things are being dictated by them still even when the highest courts in the land have ruled they aren't doing what is best for their son .

Venus. Could we possibly copy and paste your post onto the posts they make on other Facebook groups? That way they can't avoid the truth and the public will see what's really happening.

The thing I think is most awful is that there are people who are knowingly deceiving others and winding up the public. There is a webpage set up with links to articles about GOSH and all are posted with the current dates despite being published 7 or 8 years ago. There is an article which is not complimentary about the Chief Executive but this is not the current one. Lots of people are linking to this online rather tagging the original article which was published years ago. Whoever is doing this is deliberately manipulating the facts. This is not in the interests of a poor, sick child, it is whipping up hatred.

Yes feel free to paste it. There's nothing in there that isn't in the public domain. I'm glad it's helpful.

I've noticed that there's a vocal contingent based in the U.S using Charlie to make their criticisms of the NHS. Holding this up as an example of the 'flaws' of socialised healthcare. They're whipping up quite a lot of frenzy on the CA USA group.
There's a huge amount of misinformation being put out there on these groups as they politicise this case, and the majority of group members are sheep who don't want to do any of their own investigation to ascertain the facts.

Posted too soon.
I meant to say great post Venus and I wish those sheep would actually sit and read it.

Venus thats is exactly what I tried to say on a group.
They are pretty sure some sort of mito is what causing my daughters organ issues ( not brain )
The organ which is mainly effected looking at it structually looks fine but has not worked in 3 years.

I'm sorryLonelymummy. I think I saw your post.

Reason just gets shouted down. If it's allowed in at all.

I actually fear for the safety of the hospital staff now. I just hope that there is adequate security in place.

They are all trying to outdo each other, get the most likes, shares or be the most upset. It makes me sick tbh.

That's is an excellent post Venus

Oh my goodness. Just went on that awful Charlie's army page. They are saying that GOSH won't let him home as they 'no' there has been a cover up and a post mortem will show this! Arghhhh

YANBU, I feel so uncomfortable over the way it is all being twisted, though obviously feel sorry for the families involved. Haven't seen any of the conspiracy theory stuff about GOSH thankfully!

Years ago I knew a close relative of a little boy who was very ill, and sadly died after multiple treatments etc. There was a similar Facebook group and group of similar people who were very over invested in this small child they'd never met; and my friend found it really hard that all these people were having this massive public outpouring of grief - and they'd never met him, whereas she was losing a child in her family. She also found it hard that her family was sharing so much about his treatment (although obviously that was the parents right) as she had near strangers talking to her about it in so much detail. It was a very sad situation all round.

ginsoaked I have also seen various people commenting about 'death panels' and "socialism sucks" etc etc.

It's all terribly sad and the fact that some people are using the tragic situation to further their political aims makes me despair for the future TBH.