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.

Where is the evidence for this new 50% figure? Or have we yet to hear that? I have tweet alerts set up for JR but may have missed something.

Thinking of Charlie today and hoping sense prevails.

straighttalker - hear hear

And to all who will be caused upset/distress today by this

Without having done any sort of clinics trails now on earth can they give any sort of figures as to the chances of it crossing the blood to brain barrier?

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

I am so glad that if I was in this horrible situation, there are people around me who would have helped me realise, a long time ago, that it was time to let go. It's a bloody shame Connie and Chris don't have anyone willing to do that.

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

Has ANYTHING ever been proven to repair brain damage, even in people without mito conditions?!

Armstrong: I’d invite the court to review its finding of structural brain damage

I haven't the least doubt that GOSH will have done exactly that - and that the results will be presented this afternoon

I am feeling sorry for Armstrong having to try to make a case with so little evidence

Just to add that not all childrens icu's etc have ronald mcdonalds.

St marys
Kings college
Chelsea and westminister ( have very very long term patients as in years )
Xxxxx

Is Armstrong telling the judge there is no brain damage and the judge asking for proof ?

Sorry I missed that as I haddnt refreshed.

The crux of the matter rests on the amount of brain damage. It doesnt matter whether this treatment has 100% chance of crossing the BBB if it cant improve the damage then it still remains futile.
I wonder whether this point has been behind the recent shift from saying his condition was unsustainable to one of asserting that the damage isnt as bad as Gosh say.

he keeps bringing up opinions not evidence

its annoying me

Yamayo parents don't accept that he has massive brain damage. That's been what all the talk about MRI's/EEG's, he can open his eyes/watch ipad etc has been about.

Judge will get to the bottom of it all.

So because any treatment can't reverse brain damage they are now trying to argue that the first judgement was wrong about the brain damage. Is that right? Struggling to follow a bit here.

The sad thing is that CA's assertion that Charlie Gard has a "10% chance of "getting better"" will now turn into a triumphant "see! he actually has a 50% chance of "getting better"".

So far it seems that this has been exactly as expected and nothing more than a load of unsubstantiated opinions and certainly nothing to suggest anything needs to change. Surely if they had anything of substance they would have presented that first?

:( lonely, I know. It's an improvement on back when I used to do regular fundraising for them (think there were two or three then?) but still not perfect. I wonder what is the DM process for creating them. Perhaps a mn campaign could include (gradually) getting them in the other PICUs?

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

Beyond, the American doctor wasn't named in the original hearing. Not clear if this is the same doctor or a different one, but same restrictions apply.

is anyon reeading the replies on twittr

let him have a chancee

gosh are liars

thy'll bloody believe anything

Armstrong: TK2 trials are a better analogue to human condition than RRM2B mutation mice.

I know, from one of my GS's case, that the brain can adapt and overcome damage. The damage isn't repaired but other parts of the brain take over its function.
But that is where the large majority of the brain is functioning.

expert argue that brain damage cannot be 'fixed?

It's not even a matter for 'argument'. It is, I think, basic medical fact that brains do not and cannot heal themselves. Brains are highly plastic, and can re-locate functioning previously carried out by damaged portions into less damaged portions in many cases. I believe this is often seen after e.g. an accident where one area may be heavily damaged but the rest is functional. But Charlie's damage is severe and probably progressive. There is not going to be any coming back from that.

Disclaimer #2: also not medical professional of any kind and happy to be corrected on the above as needed.

Armstrong: NBT is treatment that will cross the blood/brain barrier and will have an effect on the brain

So now it will cross the blood/brain barrier? Not it might or that there's a 50% chance, but it will

This is beginning to sound silly to me ...

Surely the fact that he can't even breathe on his own is evidence of the extent of the brain damage. Are they arguing for Charlie to be maintained in his current state? Poor little boy.