Charlie Gard Case 4

[LovelyBath77]

A new thread to follow on from the others about this case

Struggling to keep up....this moves so quickly.

Why are most of "Charlie's Army" so poorly literate? Does this sort of thing attract people like that? Some of these people can't even use basic grammar that a 9 year old should know, yet they think they can interpret very complex medical information? It's laughable.

I worry for the actual safety of the HP's bit also the legal people who are seen to stand against Charlie in a conspiracy to see him ""murdered""

Me too, MommaGee, especially with the involvement/interest of the American pro-lifers.

Everyone keeps saying this treatment hasn't been tested on animals let alone humans, can anyone send a link for this - as I was under the impression it had been used on other people with mitocondrial disease, just not the strain that Charlie has. Which I think is what's confusing the parents and CA - they've seen others benefit so think Charlie will

I sent a message of support to GOSH last week and received a reply

I have read that, apart from this case, paediatricians can sometimes find themselves accused of not helping a child enough, due to the emotions of the parents in what can be termed a 'hopeless case'. In the book I read, one said it was one of the hardest things. Sometimes the only kind thing to do is to let the child go, but the parents don't see it and want someone to blame. There was even a case of one getting threatening letters, years after a child died. It must be a very difficult thing to deal with, as of course they want to to their best for the child.

Lets it is common knowledge the treatment is untested, there is a leetr being used by CA written from the doctors involved on FB and think they say so themselves on there. I'm unsure how to link to it though as not sure if you are on FB. If anyone can link to the letter being used that may be helpful.

I feel the deepest sympathy for Charlie and his parents but this stopped being about him a long time ago.

Actually I stopped having much sympathy for the parents some time ago. Their crass appeals to cheap sympathy, their attacks on the amazing staff of the GOSH, their attention-seeking use of the media, all the while saying that they just want to be with their child ... it's hypocrisy.

But it's also doing significant damage to the NHS. All those venture capitalists waiting to get their hands on a privatised NHS must be grinning with delight at this unholy mess.

Connie's surname is Yates.

Commebte about how the doctors shouldn't play God by letting him go... Just grrrrr.

Do they not see the irony? These Doctors THANK GOD do play God every day. They fight for our loved ones and for us. They being people back from the dead and pour the right combination of poisons into our body to fight against disease and illness.

Not playing God would be to turn off the machines and see what happebs

@LovelyBath77 I sent them a message of support via one of the 'contact us' addresses on their website. Wary of repeating it here because the more addresses are publicised the easier it is for people to abuse them. But I had a lovely message back, and have the impression they're genuinely grateful for messages of support as it helps them to remember that not everyone is barmy and outside the hospital protesting against them. Thank you, by the way, for keeping on starting these threads and for your wise contributions. I must say the mumsnet threads seem mostly a haven of sanity at the moment.

I'm going to bow out of these threads. This entire situation is having an awful effect on me and I'm sure I'm not alone.
My main reason for contributing was due to Charlies well being. Now I'm anxious for the parents, and concerned that if this does not go the way they hoped that they will be in a very bad place. I'm not going to spell it out, I'm sure you know what I'm saying. I don't think I can really cope with that.
I trust the courts will act in Charlies best interests this week and the parents have the support they desperately need.

Thanks onalongsabbatical. Yes it is helpful to have a place to discuss things, I feel, for people rather than just those groups, where people can be deleted if they question anything.

I need to have a break, also as it is upsetting, but glad the threads are helpful and hope people continue to post if it is helpful to them.

thanks for th links

it seems peopl are still ranting about why is th judge qustioning evrything the parents say erm because its relevant!

Maudlin xxxx

Flipping Ada. Latest from the Barmy:

"I think all the money that GOSH have wasted of the tax payers money to go to court all the time over something that really they didn't need to go to court for they just had to let him fly! All that money should have gone to his parents to help them like you say they're not able to work but they still have a house to run a house that's empty for longer because of the selfishness of the GOSH maybe they should be paying all their bills cos they are the reason they're not in it ! Poor Connie looks ill! Much more stress for that poor woman she's gonna be too ill to fight and I think that gosh no that and they think she'll just cave. The whole system is messed up all those flaming doctors have to do is say yes. They are not experts in the condition because it is so rare therefore they have no rights to play god with his life."

They are currently asking admin to check about this donating money idea because they don't want it to muck up the parents' benefits.

@Maudlinmaud

I'm sorry it's distressing you.

I agree with your comments about his parents.

They look (understandably) emotionally, physically and mentally drained.

Whatever anyone's view on their approach, it's very hard to look at them and not feel worried and anxious about they will cope this week.

I think it's reasonably clear how the court hearing will go. The judge has been clear he wants to see compelling new evidence that nucleoside therapy can not just cross the blood brain barrier but treat Charlie's structural brain damage (the extent of which the court has already accepted, even if his parents have not).

As far as I am aware, this evidence does not exist. I can't because this treatment has never been used on anyone with Charlie's condition.
Equally if it was available then the parents had no reason not to present that information to GOSH and the court.

On that basis I don't think the position of the court will change.

Connie and Chris are then facing the withdraw of treatment without having been able to come to terms that it's the right thing to do, surrounded by people to keep fighting. It's an awful scenario for them and the staff at GOSH.

I imagine publicity will be ramped up further, but ultimately the court order will be carried out, with or without parental support - even without their presence if necessary.

I feel for Chris and Connie - I really do but I think they need to starting thinking realistically about what is likely to happen and how best to manage that process to Charlie's benefit once all legal options have been exhausted.

I would be surprised if they do go down the American Citizenship as a previous poster says that is implying that american citizenship etc trumps (excuse this) everything else and is a means of going against not only a UK court decision but a European Court of Human Rights one. Trump would be idiotic to take on such a potential diplomatic mess. The UK Government I suspect would in that instance have to step in as if they did not the ramifications would be far reaching.

I dont think the judge is going to have much recourse to do much than to go with the initial order which has been sanctioned all the way up to the Supreme Court and ECHR. Unless the new evidence is such that he can but I dont think it is. I also think if that is the case the legal process will end there and there will be no maneuver for appeals.

I do find it staggering though that people genuinely believe that the doctors are doing it for anything other than CHarlie's best interest (a caveat is actually some of the American bit where the pro life at all costs stuff comes in to play, I dont agree with it but they are at least consistent).

Why are the legal team doing it though, they must know that legally there is no chance?

I need to step back from the CA page. I'm fantasising about grabbing some of the ridiculously thick posters by the shoulders and shaking them, furiously.

Charlie's parents have a right to legal representation even if their case is not strong.

It's not unethical of a lawyer to provide this. They will likely have made clear the issues/obstacles and strength of the case repeatedly.

I imagine the legal team are pretty pissed off but I imagine they'd find it exceptionally tough to walk out at this stage, given the situation.

I have also just got an email thanking me for signing the petition.
I have no idea how they got my name or email address as the only place I have posted about Charlie is on Mumsnet.
Anyone any ideas what we can do about this ?
I thought of contacting GOSH, newspapers, TV etc so if anyone else who has been told they have signed wants to let me know I will add their name.
Or if anyone has a better idea quite happy to go along with that.

@SumThucker

I've stepped away from it also.

It's very disturbing and ill informed.

The inability to correct misconceptions and ill informed posts was driving me mad to the point of shouting at my iPad

I'm new to all this as I have chosen not to read too much about it until now, but having read the Guardian link upthread the thing that jumped out to me was that Connie had found information about the 'new' treatment on the internet and provided it to GOSH but by the time they had reviewed the treatment it was deemed to be 'too late' to help Charlie. Which must feed into the idea of the CA gang that GOSH aren't trying hard enough or aren't really the experts when a simple Google search can throw up new treatments.

Thank heavens for Dr Google.