Charlie Gard Case 4

[LovelyBath77]

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

They've now found out that Charlie's solicitor has previously supporters euthanasia and are now calling her a monster.
They plan to go to the press with this and plan to find him a better one.

What a bunch of ducking cretins.

@Maudlinmaud I know exactly what you're saying and the same thing worries me. I do think the delusion regarding the parents belief that Charlie can 'get better' is so entrenched that I doubt there is anyone who could meaningfully counsel them to prepare for the inevitable. Whenever that happens and after what rulings etc, Charlie is going to die and the parents really don't seem to understand that this is inevitable.

Maudlinmaud I know what you mean. It's mentally draining to see things so clearly from one side, while the people contributing to the support page echo chamber that is Charlie's Army are a frustrating mix of hysterical and deluded.

It's the people who realise that this isn't 'a cause' to fight, it is in fact a desperately ill little boy suffering at the heart of all this, that are affected more by it I think.
I hope you're okay.

It's frightening Darth, and a lot of them still wouldn't believe an independent team of doctors looking into the case and coming to the same conclusion, they'll just shout that it's a cover-up.

This is a statement from one of the signatories to the "new evidence" letter. Seems to me that he is very much distancing himself from any crusading activity:

Ramon Marti is a chemist and the head of the Neuromuscular and Mitochondrial Pathology group at the Vall d'Hebron Research Institute, a public sector institution that promotes and develops innovative biomedical research at Barcelona's Vall d'Hebron Hospital.
Yolanda Camara is a biologist working in the area of Neuromuscular and Mitochrondial Pathology.

Mr Marti confirmed today: 'We are co-signatories on a scientific statement sent to the Great Ormond Street Hospital.

'As experts we're asked for an opinion and we give it but there's nothing else I really want to say.

'I, and I'm speaking now on a personal level, have sent this statement saying that as an expert I think this treatment could work but I'm not getting involved in the final decision because that depends on other factors I do not know about.

'I haven't seen Charlie and I'm a chemist, not a doctor. The letter says what it says and I can confirm that I signed the letter and I signed it because I felt I had to send it.

'Before I also sent a letter to Charlie's mother, signed solely by me, with basically the same message for her in case she wanted to use it through her lawyers for the trial.

'I don't remember exactly when it was sent but it was earlier this year when the trial was happening.

'The message in it was similar in that it said that in this type of illness, this type of treatment could have some kind of effect but of course I didn't offer an opinion about what should happen to Charlie above and beyond what those who know the case might conclude.

'Charlie's mum has that letter if she wants to share it with the press.

'Those have been my only two interventions in this case. I can't say that I recommend one thing or the other.

'What I can tell you is that I've sent information to the hospital. I don't know how that information has become public.'

Asked if he and Yolanda had sent the letter unsolicited, he added: 'No, we have had contact amongst ourselves as experts and we have had interaction with other actors who I'm not going to identify and we've decided to do this.'

en.m.wikipedia.org/wiki/Americans_United_for_Life

This is the people who are running the petition.
They are an American anti abortion and pro life law firm.

GOSH did look at nucleoside therapy but because it was untested on Charlie's condition they HAD to seek ethical approval to use it.

During that review his condition deteriorated to the point it was no longer deemed beneficial.

This delay has been criticised, however imagine if GOSH had given the go ahead without ethical review (not they could have done so) and his condition worsened or he died? They could be sued for malpractice.

GOSH have played this by the book, looking after Charlie's interests first. However some people want to twist the narrative to make it seem otherwise.

I think the thing that makes me sad is that if, on Thursday, the Judge orders things to remain as they are and that the life support should be withdrawn, then it's highly likely that will happen on Friday given that the last time GOSH gave them 'extra time to say goodbye' it escalated into a media/social media frenzy.

Which means that this week, possibly Charlie's last week, his parents have barely been with him as they have been in Court, appearing on TV and speaking to radio and journalists all week.

At the end of this case there are going to be just two grieving parents who may well regret that they spent the last week of their son's life away from him. I cannot see GOSH allowing them more time again. They did last time and it turned into a complete joke with the Gard's using that time to whip up an absolute media storm. Firstly by going to the papers to say that GOSH won't let them take Charlie home to die and then by encouraging CA to start tweeting and emailing everyone on the planet to get support to take Charlie to America.

This needs to end. It's a hugely emotive case and I do understand that Chris and Connie must be very stressed and upset but at the centre of all this is a little boy who seems to be forgotten except when there is a photo op and no one seems to be caring that he is in pain, he has no prospects of a normal life. The staff work tirelessly away keeping him as comfortable as possible while being vilified on social media, in the Courts and in the press by the parents and supporters and the whole thing just needs to bloody stop now.

From CA FB

"That live stream angered me by the uneducated stupid idiots commenting on some thing they know nothing about."

If you click on the CG trend on Facebook, almost all of the posts are using this as an example as why you should "resist socialised healthcare" because it's "governments making decisions that should be made by you and your doctors"- "once you have socialised healthcare you lose all your rights" etc

They parents are vulnerable, Charlie is even more vulnerable, and they are being used by the US right wing!

From here https://www.theguardian.com/uk-news/2017/jul/10/charlie-gard-key-questions-answered

What is the treatment Charlie’s parents want to try?
A doctor in the US has offered the baby nucleoside therapy, which is an experimental drug treatment that has not been tested even in mice for the disease Charlie has. The doctor has been supported by others from the Bambino Gesùpaediatric hospital’s neurosciences department in the Vatican – they wrote a joint letter to the hospital last week appealing for Great Ormond Street to rethink its decision not to treat Charlie further.
They say there is new evidence that the treatment could help the baby. They say that tests in mice and patients with a different mitochondrial condition have shown “dramatic clinical improvements”.

So that agrees with what I thought, it has been used on other people with mitochondrial disease - just not the same as Charlie. You can see why people get confused - people will take very different things from that statement

PS statement was published in the Daily Mail. Apologies. But I still thought it was interesting.

I think it shows very clearly the dispassionate, rational approach that law and medicine both require, and how dangerously and emotionally that can be interpreted.

I think they just have to fight for him as hard as they can because they would not forgive themselves if they didn't. I see the logical argument but when those who want the family to have the benefit of ever last possibility are derided on here as "thick" and their spelling is criticised it makes me feel that once more there are some who just want to enforce their views when the truth is no one really knows. It seems odd to argue that Charlie has no senses and his life is nothing and then put forward the view that he is in pain. His short life has been not much of an experience for him, would it be that bad to let him to for the treatment? It would give his parents closure and if it didn't work they would have the peace of knowing that everything possible had been done. The self righteous brigade could say "told you so" , and poor Charlie would have had the benefit of every last ounce of scientific effort to help him.

Oh good fucking Jesus, is it possible to be any more stupid than the knuckledraggers on that Facebook page!!
I am utterly astonished at such collective stupidity.

I'm becoming increasingly concerned about how Charlies parents are going to react when the inventible happens. I really hope they do accept help from medical professionals to help them cope.

I still have nothing but sympathy for them, it's a heartbreaking situation. I wish they would ignore the "supporters" and listen to Charlies medical team instead.

The people encouraging them should be ashamed of themselves. They're making the situation so much harder for the parents. You can see how much pain they're in and it's horrible.

I'll always feel horrendous for them and I pray I'll never have to be in their position.

There's a growing sense that the parents are being handled with kid gloves. Time to get tough I think.
I'm sick to death of seeing them courting the gutter Press.

His short life has been not much of an experience for him, would it be that bad to let him to for the treatment?

This has taken my breath away- so it's OK to cause him more pain and distress and god knows what side effects- because hey! his life's been pretty shit anyway!

I think they should give him a chance. The parents say he is not in pain.

Lots of posts like "people who support socialized healthcare would rather that babies like Charlie were never born by giving out free contraception and abortions than preserve the life of a little baby like Charlie. It's people who want other people to pay for their healthcare and don't wake up to the fact that you lose all parental rights once the government is involved."

etc etc etc.

Except, had CG been born in the US he wouldn't have lived this long in order for any of this to even have been an issue, parents like C&C wouldn't have had acesss to GOSH standard of healthcare anyway!

"They say there is new evidence that the treatment could help the baby. They say that tests in mice and patients with a different mitochondrial condition have shown “dramatic clinical improvements”

And these people (including the girl on the bike) don't have brain damage. Is this why Connie and Chris are so adamant that Charlie doesn't have brain damage?

There are some CA people who are at least saying that the QC for Charlie's guardian does not have a conflict of interest due to her supporting euthanasia. And they haven't been deleted yet.

I think they should give him a chance. The parents say he is not in pain

He is not able to express pain! that is not the same as not being in pain!

Look at the most recent pictures! His whole body is so swollen it looks like it's about to pop! If he's alive enough to feel anything, that alone (never mind the internal damage of his condition) will be hurting all over

I have never seen the FB page but I see that the parents posted only 12 hours ago stating "If your child was ill and you had the choice of giving them a non harmful medication that clinically had a 10% chance of important improvement would you take that chance? " ... who has told them the medication is non harmful - who has told them there is a 10% chance of important improvement... they show a picture of a boy kicking a football implying that could be Charlie with the treatment - someone is feeding them incorrect information

A chance at what though?! He will never be well unfortunately.

@ExConstance

As many medics on this thread have confirmed it's perfectly possible for Charlie to be brain damaged and STILL be in pain.

His condition is such, that establishing how much pain he is in is incredibly difficult.

He also has many other complications with vital organs such as his kidneys. He's a very, very sick child.

There is no evidence that this treatment will improve his quality of life (but the parents have the opportunity to present this should it exist). IF it works it could at best sustain his current condition - which is not in Charlie's best interests.

So giving this treatment is condemning Charlie to months of pain and suffering for no benefit which is why GOSH argue it's unethical.