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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
Maudlinmaud · 15/07/2017 14:01

What story has been percolating on the Internet for the last few days? There has been so many. Could it be the head measurement business?

TheSlowLoris · 15/07/2017 14:02

CA are so fixated on the morphine thing.

GabsAlot · 15/07/2017 14:02

strange tweet it cant be anything of substance though if its somthing on the internet can it

othr than another interview/piece from the family

this woman just loves attntion doesnt she-i actually wish other countris would keep their nose out esp these pro lifers

excluding doctors

AnneofGreenGablesAgain · 15/07/2017 14:03

I can see all that sirzy, but equally as a mother I feel for them so much and see their plight is heart rending.

The court will work hard to decide this fairly and I am hoping the 10% is of some quality of life and he is not in pain. If so I hope the parents will get the right to try the therapy if they feel that is best for him.

raspberrysuicide · 15/07/2017 14:03

This 10% chance of improvement is measured by the amount of time the trial patients reliance on a ventilator to breathe. 1 was completely weaned off the ventilator and the other 4 used it less.
So basically he has a 10% chance of not needing a ventilator 24hours a day.

Sirzy · 15/07/2017 14:05

I don't think there is a poster on here who doesn't feel for them and the position they are in. I think they are sadly now in a position where they are backed into a corner which isn't helping them or Charlie.

Original poster
muckypup73 · 15/07/2017 14:06

0nline, I guess that is true, I hope the American doctor has been and examined Charlie and said no can do.

I found the charlie missed his last shot 2 weeks ago, thats why I thought the doc may have been?

Or perhaps the parents have said yes to the scan to measure his skull and its not gone the parents way?

OP posts:
reallyanotherone · 15/07/2017 14:07

So basically he has a 10% chance of not needing a ventilator 24hours a day.

This is from a starting point of no encephalopathy though?

So from previous patients the 10% success rate is in those with the variant that only affects muscle, not brain. The brain can give the instructions to breathe, the body is too weak to respond.

If i understand right i strongly suspect charlies brain is too damaged to instruct his body to breathe. If so, he has no chance of vent being reduced.

Original poster
muckypup73 · 15/07/2017 14:07

raspberrysuicide, so that 10% is basically nothing, charlie will still be blind, deaf, unable to cry ect and still have severe epileptic fits which cause more brain damage. so what excatly is that point of 10% charlie will still need 24 hours care day in day out.

OP posts:
FallenUnicorn · 15/07/2017 14:08

CA have said that the doctors at GOSH are going to have their egos very badly hurt when Dr Hirano comes over, because he is so much more qualified than all of them and that surely they'll be intimidated by how much better he is at handling all this. But he said the opposite in court didn't he? Something along the lines of not wanting to interfere with a hospital as great as GOSH?

I don't understand their mentality, or I kind of do, but it's absolutely inexcusable.

Ta1kinPeace · 15/07/2017 14:09

raspberry
This 10% chance of improvement is measured by the amount of time the trial patients reliance on a ventilator to breathe. 1 was completely weaned off the ventilator and the other 4 used it less. So basically he has a 10% chance of not needing a ventilator 24hours a day.
Do you have a link for that ?

And if he's not on a ventilator, whooppeee dos
He is still blind, deaf, paralysed and starting to get organ failure

Original poster
muckypup73 · 15/07/2017 14:09

TheSlowLoris, Ca are fixed on anything that they might think will discredit Gosh...............

OP posts:
FallenUnicorn · 15/07/2017 14:09

raspberrysuicide which post are you commenting on, I'll look for you on there.

Original poster
muckypup73 · 15/07/2017 14:10

FallenUnicorn,somehow I doubt very much it will go charlies armys way when the Usa doc comes over, he has claimed he was never told the full extent of charlies condition, when he gets here and sees charlie for himself, they are not going to like what he says, then Ca will say Gosh paid him off....................

OP posts:
11122aa · 15/07/2017 14:10

I hope it aint something to do with further Trump or American congress involvement.

Ta1kinPeace · 15/07/2017 14:11

really
If i understand right i strongly suspect charlies brain is too damaged to instruct his body to breathe
I thought it was a result of his diaphragm being too weak - like all his muscles.

Lexieblue · 15/07/2017 14:11

Oh no its not us citizenship is it?

Rhodiolia · 15/07/2017 14:12

Still catching up the last thread, but I saw a couple of people asking how @lonelymummyof1 was doing. I haven't heard anything from her in the last couple of days and there are no updates on her DD on FB, so I am hoping everything is ok with them.

NellieBuff · 15/07/2017 14:12

Anne - we do need to respect that parent's views may be different from that of the medical team. However, their views must not be enforced in a way that could harm or cause pain to their children.

Too much emphasise has been placed on the American research which is still in it's early stages. Mistakes do happen but clinging to a false hope is also a mistake.

For example the CA are saying "He could fully recover!" (that's a direct quote in case folks are wondering) - in the very best of scenarios that is never going to happen.

Charlie's parents must now begin the very difficult journey of accepting that their little boy is never going to get better and have a good quality of life. It does not mean that they do not love him just that it now time to find the courage to let go.

GriefLeavesItsMark · 15/07/2017 14:13

Currently discussing Charlie Gard on any answers radio 4.

TheSlowLoris · 15/07/2017 14:14

The thought of Charlie's law is quite scary.

FallenUnicorn · 15/07/2017 14:14

Muckypup agreed, it's not going to go well :( I admit that I was at first really confused and frustrated at what the judge was doing, but reading between the lines I can see he is thinking ahead here, and making sure that he covers all bases. I just don't like the fact that he said end of July was too long to wait, but now that's what is happening.

I can't bear the thought of Charlie having one day of pain :(

Oh and yes they have already been saying that GOSH will have no problem in bribing the doctor or brainwashing him etc eyeroll

GabsAlot · 15/07/2017 14:14

i dont think it cold go through that quickly lexie i could be wrong though

GabsAlot · 15/07/2017 14:17

thanks @rhodiola please pas on best wishes when you do hear from her

hope vrything is ok

0nline · 15/07/2017 14:17

mucky.

It might just be something to do with the petition.

It's a bit click baity as a tweet. People underneath worrying, wanting to know more, but she says nothing.

If there was to be a really big announcement I don't think it would need help to be promoted. So I'm leaving lots of room for something not really that big of a deal, which needs a nerve jangling emoji to help generate interest to get clicks when released.