Charlie Gard 9

[muckypup73]

Hi guys new thread.

Let's try to keep this one as sensible and measured as the past 7 threads have been.

Please note the MNHQ comment on thread number 7.

"Hi everyone,

..... We had to remove several parent-blaming posts, so we'd like to ask folk not to do this. We think we can all agree that this is a truly awful time for all involved and we just wouldn't wish it on anyone. If there's anything we could do with more of, it's support. We'll continue to remove reported posts that break TGs (if we've missed something, do feel free to let us know).

If we have to make too many deletions, we will need to look at removing the thread; which is the last thing we wish to do.

Thanks all"

Yes mucky it is very curious as to why Hinaro didn't come over earlier unless his research was still ongoing or hadn't been analysed to provide anything meaningful regarding treatment. Although on the flip side I assume he knew a baby's life hung in the balance and how the court proceedings had gone. If he believes in this treatment as fervently as the parents and truly believed Charlie had a good (up to 56%?) Of improvement why did he not either a)state as much to the judge ie my research will have a definite answer on... or b)come sooner. If he comes and examines Charlie and finds the treatment will not work or he is too ill he will have given them unfounded hope for 6 months!

I just see no winners here sadly

Can posters please stop with the criticism of the parents - especially Sostenueto

However much my belief that Charlie should be allowed to pass away without this circus I absolutely believe that Connie and Chris absolutely believe they are acting in Charlie's best interests - i.e there is a small chance that he will benefit from the treatment.

Claims of putting themselves first and criticising them - it's their little boy, they are ignoring the majority of expert opinion and hanging onto a slight chance that their son can live - Really uncomfortable at some of the posts now slating his parents

No parental 'rights ' in Britain only parent responsibility. That us the LAW.

I have not slated the parents. What I put on this thread has been discussed in the media and in court!

I am fairly sure a lot of the more jawdropping posts are by trolls who have joined to take the pies.

For example (can't cut and paste on my tablet)
" I saw a photo of a guy was allowed to visit Charlie the other day , was he like a priest or something ? Could he take the measurement? He is trustworthy person right?"

No one could be that dense and still have opposable thumbs.

I disagree Sosteneto

You've been very vocal in criticising them on this tread and the previous.

I can trawl back and find them if you insist? I just don't believe for one minute Charlie's parent's have anything but hope that this treatment will work hence dismissing experts opinion.

Again, I disagree - I'm really uncomfortable it the nasty comments against his parents.

WARNING: CONSISTS PURELY OF MY LIMITED UNDERSTANDINGS: Chestervase, GOSH were preparing to try the nucleoside treatment on Charlie in January, but as it had never been used on someone with his precise condition before, it had to go through their ethics committee. While that was happening, he had a series of seizures which they believe caused most of the brain damage he suffers. They didn't believe that it was then appropriate to try the treatment on him as it had no prospect of treating the new core issue of brain tissue damage. Charlie's parents do not accept that the brain damage is irreversible.

So the issue is that although the treatment has some small chance of improving things with Charlie's mitochondria, he would still be left profoundly disabled, blind and deaf, in the view of GOSH. And as they are obliged to consider "the child, first and always", it's their view that this treatment can only prolong an already unacceptable quality of life with no real prospect of improvement. So they tried to get Charlie's parents to agree to switch off the life support, which they refused. The case in April was about that.

They are not the ones on life support Cinderella Charlie is. The whole court proceedings is about Charlie and what us right for him. Thus latest fiasco was brought by the parents who said there was new evidence about the treatment. An expert was brought in by them who needs evidence if extent of brain damage before he could give an informed opinion of Charlie's chances if as yet untested medication working. The parents refuse to let scans take place to give said expert the information he requires. Meanwhile back in the ICU unit a baby is suffering, yes, suffering! What I have just posted us not slagging off the parents it is fact. Facts the court is well aware of.

Where has Sostenueto slated the parents? I've just gone back to re-read, and all her points were factual, not accusatory.
CY has refused to allow a brain scan which is telling in itself.
CY has tried to say the tape measure increase is proof his brain is growing, which as any idiot can tell you is proof of nothing.

My DSis was born with hydrocephaly. It certainly did not equate to having a larger than average brain.

Quite a few previous court cases where hospital trusts have gone to court. Maybe this is a bigger problem than just the Gard case.

Thanks for support montypython.

Has it been ascertained why GOSH refused the parents wishes to take Charlie to US for treatment. Wasn't he able to travel before the fits.

GOSH was looking into providing the treatment themselves, but Charlie's condition deteriorated quickly, and they believed it would not be beneficial.

it is very curious as to why Hinaro didn't come over earlier

At the time of the first court hearing, it was said he initially thought he might be able to help, but he didn't realise how serious Charlie's condition was. When he found out, he said he didn't think his treatment could help Charlie. There would have been no point in him coming over then.

Both those points were covered in the first court hearing.

Cinderllaspinkdress but you have to agree that Sostenuato's point about refusing the scan to measure head growth is going to mean that Charlie won't get the treatment the parents seek, because the US expert has made his help contingent on that information, in nearly as many words.

As much as I agree with GOSH that the treatment won't work & is of no benefit to Charlie, and have done all along, it's become such a circus now that I just wish they'd tried it out to start with, it would have been over by now, instead they've spent all this time dragging it through the courts & its still not resolved (by 'they' I don't mean GOSH, obviously they never chose to have it appealed so many times)

If on the 25th the judge chooses to agree with GOSH, Charlies family will want it held off for another week & a half because it will be Charlies birthday, and look where that got them last time they gave them more time. I know why it can't really be ruled in the parents favour ( not in Charlies interest, will pave the way for other parents to put the NHS through this etc) but bloody hell its going on too long & getting ridiculous now, for GOSH's sake I sort of want to say just have it your way, try your treatment but at least leave Charlie where he is so he hasn't got the added danger of being moved to a different country!

And I can see why people think that Connie shouldn't be allowed into that meeting but I think she needs to be there, she needs to hear what everyone has to say, she needs to hear it all discussed properly, the difference between the MRI and the EEG, the actual statistics and the difference between what this medication could do for his mitochondrial disease vs what it cannot do for brain damage. Instead of the judge flitting between what the parents believe, what this american expert believes, and what Charlies current condition may or may not be, it all needs to be laid out on the table and discussed properly so the people in favour of the treatment can agree it won't work, or (as I'm prepared to be proved wrong, and would love to be in this case) they can assess Charlies current condition & convince GOSH/judge that the treatment will actually have a good chance of working. This is all a massive nightmare and one way or another everyone wants it to be over

Thank you logical

I don't think you have either Sostenueto

Cinderella

I just don't believe for one minute Charlie's parent's have anything but hope that this treatment will work hence dismissing experts opinion.

If I truly believed my baby's brain was growing, I would insist on a brain scan being performed, to confirm why I had convicton in my beliefs.
But the parents have said Court must rely on a tape measure estimate, because all scans which could instantly prove them right or wrong have been blocked.

Sostenueto - I am not in any way a member of Charlie's Army or similar but I think the facts in monty's post are correct and I can see how this has created the current situation

Rightly or wrongly it seems that the parents believe that the delay (for whatever good reason) in initially allowing the treatment to be carried out, has lead to this particular situation. They also seem (in moments on rationality) to accept that the quality of Charlie's life is very poor. However, (and as I have said upthread however deluded this is) they genuinely believe that this treatment will materially help their son. Therefore while it is not ideal that he maybe in serious pain etc, it is the least bad option as he may get better.

I posted thismon the lastnthreda but am,doing so again - it's an explanation to different approach of UK and USA towards withdrawing life support.

www.statnews.com/2017/07/13/charlie-gard-life-support-ethics/?s_campaign=trendmd_internal

Typos, sorry.

Bedtime

Hear! Hear! And all I think about is all the other poor families in gosh having to make a decision about their loved ones and all they have around them is this circus playing out. Where's the consideration for them? Where's the dignity for them?

I absolutely agree with the doctor's and would like to make that clear. I absolutely believe Charlie should be allowed to pass away.

What I'm uncomfortable with is some posts criticising his parents - they are hanging onto a shred of hope that with treatment he can survive.

I've been at work today and just back so catching up but what struck me was your comments about the parents - they absolutely believe this treatment will 'save' him

A bit empathy and not criticising them wouldn't go amiss x

Feel free to start your own thread about that, @randomer

The new treatment has not even been tested on mice. It would take 2 -3 years for the right mice to be ready. It has NEVER been tested on anyone who has Charlie's type of Mico and the enco and Charlie would be the first to receive thus treatment. The so called 10% is improvement in muscle energy. As Charlie's condition is a cellular one and not structural any treatment would gave to be life long as the Mico is inside cell structure and when it divides the fault gene will still be present. Connie's brief said side effects may only he dirrohea but they aren't sure and Connie could cope with that. Excuse me Connie isn't the one who will have the shits permanently, Charlie will though. His long can a babe last with constant dirohea? Anyone know? How long before already damaged internal organs will last? Charlie will never, ever ride that bike! Cloud cuckoo land!

Thankyou rabbitnohare