Charlie Gard 6

[CaveMum]

New thread so that we can await this morning's hearing.

Let's try to keep this one as sensible and measured as the past 5 threads have been.

Fingers crossed that this can all be resolved today and that Charlie and his parents can find peace.

This sounds as if there has been new evidence since April. And so couldn't have been included at that stage.

Not sure whether the video evidence is with original doctor or one of the signatories to the letter

That is true, there are no living children with the same illness as poor Charlie. But that doesn't stop them testing on mice etc to check the new drug is safe first.

I wonder if GOSH will address the brain damage point again. :(

Thanks bore :)

GabsAlot, yes they want to use him as a guinea pig.

Comments on the tweets are like spectators at a football match. Loads of "Come on Charlie!" as if he just needs to keep trying, and "Come on Armstrong!" I'm just waiting for them to shout "Goal!"

Dorothea - I know but I assumed that only applied to HCPs providing treatment at present, not expert opinions from elsewhere

Can someone clarify this for me? Has the proposed treatment worked on children that have received it?

key word there is opinion thats not evidence is it

guinea pig

Judge: the hospitals in NY and Rome have not seen Charlie. Armstrong: GOSH have given them the information they would need for a referral.

And according to CA impossible to 'find' a mouse with it either to test it on.
Maybe they'd have been better employed catching mice

I am no doctor but didn't they mention in the previous appeal that his paralysis and inability to swallow or breathe were caused by massive brain damage and that expert argue that brain damage cannot be 'fixed?

So basically the parents are desperate to try an untested experimental treatment which at best will maintain their son in the condition he is in right now.

I'm actually in awe of GOSH PICU intensivists/paediatricians throughout this. They have kept Charlie's interests so firmly fixed in their minds despite all this pointless sound and fury.

Right until the court's decision was upheld on appeal, they could have thrown up their hands and said whatever, you want to take him to the US, do it. No skin off our noses. Organise your own ambulance, your own flight, your own accompanying medic and nurse, your own equipment (they might have gotten a private UK aeromedical company to do this but I think given the publicity they probably would have had to go abroad). Sit in a US hospital for a couple of months with Charlie on a ventilator, getting steadily weaker, while this snake oil is administered to him. Run through the funds that have been donated.

But no, they've done this all for Charlie, so he isn't tortured a day beyond what they can help.

There are no words to express my admiration for the Great Ormond staff.

"There is a perfectly rational basis for applying this treatment to Charlie."

Really!?

Armstrong: NBT is treatment that will cross the blood/brain barrier and willl have an effect on the brain. Judge: but can it repair damage?

"Find" a mouse with MDS. Ffs 🙄

noon as severe a charlie has had this treatment

This is making me feel incredibly sad. The parents are putting themselves through hell.

@straighttalker absolutely, well said!

50% chance of crossing the blood brain barrier - but no evidence of what the medication will actually do for Charlie

No clinical trials either, which makes this opinion instead of evidence

And I thought the judge wanted evidence ...?

Judge asking if treatment will repair damage...wonder which figure Armstrong will give and how accurate it will be.

Armstrong: NBT is treatment that will cross the blood/brain barrier and willl have an effect on the brain. Judge: but can it repair damage?

There's a former nursery worker on Barmy who also studied law coming out with stuff like this: "Gosh should be a shamed of themselves.. if charlie gets to go america 🤞🤞 which he should! Some people in gosh need to lose their jobs, gosh needs to be investigated for the publics interests and connie chris and charlie needs an apology off them. Gosh makes me sick..."

And some of her previous comments about the legal proceedings and the Judge have been so daft I can't believe she studied law. Until you read she did so for three years at a Sports College. WTF???

Oh, and by the way, when the completely futile treatment fails, and the Gard's money has run out, what then? How will they transport him home? Will the US hospital "pull out" then with all the raving evangelical Christian focus on this case or seek to push him back to the UK so they can resume this nightmare all over again. I know which it will be. There will always be another treatment, another hope, another newspaper article or interview for the family.

The poor desperate silly people. The prison of their own making they have locked themselves in can't be imagined.

And to know that if they have another child, they have a fairly large chance of this happening again...

Armstrong: I’d invite the court to review its finding of structural brain damage. Judge: I would need new material [evidence] for that.