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.

Dorothea it's a different type. Only 15 other people have had the same strain as Charlie and they're all dead.

At one point I always thought the decision would be made to switch the ventilator off but for some reason I now have a bad feeling that they are going to let the treatment go ahead.

So the parents' own expert has now confirmed that the treatment for Charlie's particular condition hasn't been tested at all, that they don't have the necessary mice to do this testing, and that even if they did it would take 1 - 2 years to complete the research ... however he "believes" the variant on which it has been tested bears "enough similarity" to give it a go

I'll say it yet again: I thought the judge wanted evidence rather than wishful thinking??

At least now we know where the 10 percent comes from

At one point I always thought the decision would be made to switch the ventilator off but for some reason I now have a bad feeling that they are going to let the treatment go ahead.

Me too.

I can see better now why Connie and Chris have become so fixated on this. All the statistics and the seductive detail about what's possible. The question really is whether any of it is at all relevant to Charlie's case.

Writer hopefully they are just letting him have his say to show that they have explored every avenue of possiblity.

GabsAlot I think he was saying structurally the brain seems ok but he cannot gauge function. So it looks like a perfectly fine brain but he cant say if its functioning as it should?

i agree puzzl its not new evidence at all

@Sluttybartfast

I agree

@SomeDyke precisely.

Peter Singer has co-written an article addressing this issue. His typically utilitarian approach to this seems to be that treatment may help Charlie and may** help scientists to help other sufferers, so there is perhaps an ethical case for using Charlie as an experiment provided he is nourished and given pain killers.

I don't agree with him in this particular case, but some clearly will.

Sorry if it's been posted before, I've been away from the thread for a while.

mobile.abc.net.au/news/2017-07-13/charlie-gard-donald-trump-and-the-pope-are-right/8706390?pfmredir=sm

Okay, NY witness says they see no evidence of structural brain damage, and the 10% estimate is of increased muscle function (i.e off the ventilator).

So, for the judge, the key question is -- Is the evidence of structural brain damage sound, and is anyone prepared to argue that there is a chance of the treatment improving it if it is sound? Because otherwise, seems as if even given the NY witnesses best case scenario, you would in danger of ending up with Charlie being 'beyond experience', but not on a ventilator, so you could not then even release him from his non-experience by removing ventilation support. Which would be even grimmer than where he is now frankly!

Meanwhile Catherine Glenn foster is teeeting sensationalist rubbish

Some of CA cheering that is brain damage may be functional rather than structural. FFS.

(Obvs last post mine)

This evidence is incredibly contradictory isn't it? He's not brain damaged but brain damage is hard to assess. It comes across as still quite woolly and he has not yet been cross examined. I feel very uneasy that they are hoping to make Charlie a guinea pig for this, we have medical ethics laws for a reason.

Its still the same condition! Flu is still flu no matter what strain it is so why is this any different!

FFS

Does anyone have a link to the actual mouse research? Or a title, so I can find it?

thisis 10% of the othr strain of somedyke not charlies

Can someone remind me, are they proposing treating Charlie abroad or at GOSH?
I have to say although I don't like the way the parents have turned this into a circus, my heart breaks when I see pictures of them with Charlie when he was just born. They look proud as punch and he's just angelic.

they need to clarify the difference between structural and functional. You can have a structurally normal brain ie no bits missing, no bleeds, no tumours, but functionally if the cells are damaged it wont work.

I'm not sure whether he hasn't seen it because GOSH haven't sent it to him or whether he has seen it and disagrees that it's there, jelli.

It's a bit difficult to pick up nuances in 140 character tweets.

NY expert: nobody can tell whether brain damage is irreversible. MRI or EEG tests don’t indicate whether Charlie is in pain.

pasanda
Who would want to live like that? Or have someone they love live like that? It's just bizarre to me.

I just wonder now if, God forbid, say Chris Gard was in an accident which left him blind and deaf, unable to even move or interact in any way, incontinent and with muscle atrophy, intubated on a ventilator, with such degraded motor function that he couldn't even swallow or cry- would Connie Yates fight every single court in the land to keep him 'alive'?
Or, would she accept that his obstacles were just too great to overcome, and with a heavy heart, let him go? I suspect the latter.

Which makes me wonder, why this shell of an existence is okay for her son to endure.

Cmon mr Rozenberg bring justice to Charlie bring him home bring him life!! We salut you sir...!!! Fight fight fight

Um, do you want to tell her or shall I....?