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Original poster

Charlie Gard 9

999 replies

muckypup73 · 14/07/2017 20:53

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"

OP posts:
Thread gallery
6
SimplyNigella · 15/07/2017 15:07

Rhodiolia thank you for the update. I do hope everything is ok.

Ta1kinPeace · 15/07/2017 15:08

littlebrownbag
You do not need green card or any of that to go to the US for medical treatment if you are paying.
I know because a friend took her daughter to Boston for cancer surgery that is now available on the NHS because it was proven to work
and they went under the visa waiver programme for the two months it took till the girl was well enough to fly home.
THen again she was able to walk herself onto the plane going out ....

salemcat · 15/07/2017 15:08

Ta1kinPeace , thanks for that.

Poor little lad, there really is no hope for him at all, what kind of life would that be.

CaveMum · 15/07/2017 15:09

salemcat my understanding, and I'm happy to be corrected, is that the best outcome for Charlie would be that he comes off the ventilator. He will certainly never walk, talk, ride a bike (as CA seem to believe), etc plus he will need to stay on the treatment for life as the issue is at a cellular level meaning every time his cells regenerate they do so with the "fault" built into them.

If he were to survive long term he would still require 24 hour care.

salemcat · 15/07/2017 15:12

CaveMum, that's just a horrifying thought, he would basically be trapped in a body that doesn't work with no way of breaking free.

Original poster
muckypup73 · 15/07/2017 15:13

CaveMum, i seriously think Ca are deluded, how much false hope are they trying to give the family??? by saying he will walk,he will ride a bike ect, I find that extremley cruel.

OP posts:
littlebrownbag · 15/07/2017 15:13

Ta1kinPeace exactly, this was/is just a political move to appeal to the supporters of the politicians involved, it did/does not actually do anything to help Charlie or his parents.

littlebrownbag · 15/07/2017 15:15

(sorry hit send too soon) apart from they could live over there permanently if they wanted rather than having to return. If you go over on an ESTA you have to leave within 90 days.

MirandaWest · 15/07/2017 15:17

I think the idea with US citizenship according to CA is that if he had it, Trump would be able to appear and whisk him away in a way that he can't do at the moment.

The fact this is all very unlikely is of course irrelevant to the hope it gives

GriefLeavesItsMark · 15/07/2017 15:24

Yes, I heard the programme, I think the lady's name was Wendy? Anita sounded quite shaken by the end. I would urge anyone who didn't hear it to try to find it on 'listen again' for an insight into the reality of caring for a seriously disabled person.

littlebrownbag · 15/07/2017 15:24

But even if it was citizenship (which it isn't), they wouldn't lost their UK citizenship, and while they are in the UK, it would be UK law that had supremacy.

Dual citizenship usually comes with terms that expressly forbid one country interfering in another country's business. So if you held both UK and US citizenship and got into trouble in, say, China then you could call on either or both US and UK to help. But if you got into trouble in the US, the UK wouldn't come and help you as you are in a country where you are citizen. Same here, it would do absolutely nothing apart from trigger a huge diplomatic nightmare and I think even President Trump could be persuaded out of it.

CaveMum · 15/07/2017 15:25

I think CA (and the family) have latched onto the stories of other children with Mito disorders and seen that they have recovered in some form. What they fail to comprehend (despite being told many, many times) is that those children they see pictures of have a totally different type of Mito disorder and are in no way comparable to what Charlie has.

DonutCone · 15/07/2017 15:25

Yeah I mean Trump will risk a major international incident but taking a baby from a hospital. A baby he's never met. That is subject to a travel ban. That would probably die on the journey.

These people are so deluded.

MirandaWest · 15/07/2017 15:31

Oh I agree it is deluded.

Thinking about it, Trump sent one tweet I think and that was turned into a lot of things it wasn't.

DorotheaBeale · 15/07/2017 15:33

What they fail to comprehend (despite being told many, many times).....

Yes, exactly. If Connie was as expert as she claims to be, she would understand that. But they really don't seem to be understanding and taking on board the scientific evidence.

Even Dr Hirano, their own expert witness, couldn't offer hope of more than possibly a small improvement in Charlie's condition, and that's without considering the extent of his brain damage.

SymphonyofShadows · 15/07/2017 15:37

Delurking to say how aghast I am at CA. Trump, Jeremy Kyle, abuse and threats to GOSH, the tasteless tat they are selling and the payments directly to the parents PayPal and bank accounts all beggar belief.

Why are they so determined to 'get him off morphine'?

BubblesBuddy · 15/07/2017 15:46

The Joshua Rosenberg tweets from court yesterday made it totally clear that Connie can only speak at the medical meeting when invited by the independent Chairman to do so. It was on this basis she is allowed to attend.

I would suggest that when the case resumes, MN contributors follow the case via Joshua Rosenberg twitter for an accurate version of events and what councel and the judge are actually saying. These comments are not filtered or twisted to fit a certain view point. In the meantime, what anyone says on a web site or on twitter is irrelevant and will not be considered by the court.

LovelyBath77 · 15/07/2017 15:48

Anyone read the article in the Times today opining that they should let him go and about the parents rights?

littlebrownbag · 15/07/2017 15:55

Why are they so determined to 'get him off morphine'?
There seems to be a mis-conception amongst many people that it is only given to patients at end of life to ease their passing, and that it is the morphine that then "kills" the patient.

People like my elderly dad, who has a fear of situations like this and instructs us "just fill me up with morphine and let me go" if he is seriously ill - as in "let me go free of pain and don't let me linger".

GinSoakedTwitchyPony · 15/07/2017 15:56

CA wishing Charlie 'Happy 1st Birthday". I thought his birthday was in early August? Confused

GinSoakedTwitchyPony · 15/07/2017 15:58

I've just forced myself to read the CA thread a bit closer and it seems that they're planning to buy big cards to add these well wishes to. They don't think it's his birthday today.

DorotheaBeale · 15/07/2017 15:59

I would suggest that when the case resumes, MN contributors follow the case via Joshua Rosenberg twitter for an accurate version of events and what councel and the judge are actually saying.

If you have followed the last few threads, you will have seen that we have been doing that.

That doesn't preclude reading and commenting on what other websites and news outlets are saying.

Jux · 15/07/2017 16:01

The first time this US doc gave evidence, he thought his treatment might help, but didn't really know. Upon close questioning by this Judge, it was ascertained that there was no reason to believe that the treatment would help and so was dismissed.

Unless this doctor can absolutely show that Charlie's life is going to be qualitatively improved then I can't see the judge ruling any differently than he did last time.

Don't forget, this is not going to be a question of one doctor disagreeing woth GOSH (if it comes to that at all). It will be closely and carefully scrutinised by a very good Judge, who will then make a ruling.

LovelyBath77 · 15/07/2017 16:02

I think they feel he is being doped by the morphine and without it would be able to be free...Hmm to get up etc.

LovelyBath77 · 15/07/2017 16:03

Prefer the tweets being on here, as we can comment.