Charlie gard case thread 2

[Fancythat69]

The last thread is full, Not sure if another has been started.

Theres a CA rally at GOSH planned for tomorrow. What are these people on?

I'm genuinly trying to understand ! so don't shoot me down and I am trying to "get" what they might be fighting for ,surely if brain function exists and the treatment works he could theorectically recover of course with disabilty's ect .

Can someone also explain what the 10% is about? Is that a 10% chance of improvement, or a 10% improvement in his faculties? Or something else?
And how on earth is that calculated?

Baba if you read the thread there are many posts that explain that.

So here's theoretically what would happen re Charlie and the US.

The Congressman is not offering citizenship, he can't do that. He's proposing that Charlie be granted Legal Residence (i.e. Green Card). Whether or not he has that power, I don't know but let's say he does. First, they'd have to find a facility willing to treat him. The Congressman can't force that and I believe the original offer has been withdrawn. But let's say there is one. Charlie's parents will then have to 'find and fund a way' here. And that 2 mil won't last very long when it comes to the costs of treatment (because not everything will be 'donated' even if the doctor works pro bono) and for his parents to stay with him. After that 2 mil is gone, what then? Who will pay for his care? How will his parents live? Do they plan to get jobs here? There's no social network for them. No housing, no benefits. And no work if they aren't granted Perm Res, too. And if all that is expected is a 10% 'improvement' he'll still need continuous hospital care. And who will pick up the tab on that? The American People by way of taxes to fund Medicaid. And are his parents willing to exile themselves from the UK permanently because what hospital in the UK would be willing to admit Charlie knowing the publicity that will follow their every move?

It's sheer madness.

The best thing that can happen is for the courts to make a ruling and for the court to set a date to turn off the machines. Then GOSH will be able to say that they are simply following court orders.

Don't think anyone has posted this? Brief statement by the president of the Royal College of Paediatrics and Child Health:

www.rcpch.ac.uk/news/rcpch-statement-charlie-gard-case

thatdearoctopus Ya thats from it to. I Googled out of curiosity and the picture was on there from then.

Apparently they are going to show the court they will not be silenced.

WTF? When have they ever been silenced? Clearly they have had full access to the media. And it is the very essence of court proceedings that each party gets an equal chance to have their say. I really hate these attempts to drum up some sort of stupid conspiracy/persecution theory.

Good grief, there's people on the facebook page actually getting tattoos!

Good link @nocoolnamesleft

In contrast - comment here from a CA "supporter" the BBC news fab page:

When people have a progressive disease they fight for any treatment available and hold onto the hope that it will improve the condition. When a minor improvement is something to someone who has a condition and is in daily pain. Just cos they're in pain daily and constantly are going blind and deaf and are losing all senses does not mean they don't deserve a chance at life

That last sentence

*FB

Jeez. My typing tonight!

Well they've got the pro-lifers on board.
Not sure quite what they think. Do they believe life should be sustained at any cost or are they expecting a miracle ?
Then there's Trump and his republican cronies who IMO are only looking for political gain.
Who else may crawl out of the woodwork before this sorry circus is over ?

I was also wondering where the grandparents are in all this. But from looking at fb the family all seem to be in agreement with the parents. Connie's parents are sharing CA stuff too.

I am presuming his mum and dad are religious with the type of support they have been seeking.

I hope to goodness the pope and that pastor are. So surely they all believe that when Charlie does die something amazing will be waiting for him in heaven?
I don't want to get into a debate about heaven being real or not, but if that is something that is in your belief system, if you hand on heart believe something better is waiting for your child, why would you keep them in pain?

After loosing dd the heaven comments people made were a comfort to me. I clung to them, I guess because I couldn't cling to her. I needed to know her little soul was somewhere and happier than ever. But if you already have that belief system surely it must make your decision to end his suffering easier, or am I missing something?

3littlebadgers I've known a few Christian parents who've lost children, and they have drawn immense comfort in that thought. It's a promise in scripture that there will be no more tears and no more pain.

Connie will be on the Today programme this morning.

Just cos they're in pain daily and constantly are going blind and deaf and are losing all senses does not mean they don't deserve a chance at life

This is beyond belief. A relative was in this exact situation and they asked me to kill them because of the misery that they were going through.

And I have to ask; popes, archbishops, presidents you name it, are fighting for the rights of this one baby.
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WHY? * *
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100's, maybe 1000's of babies a day are ill, (and die) all over the world. Yet these people have gone into meltdown over this one baby. Why?

Probably for the same reason you haven't written anything about all those other 100's, maybe 1000's of babies?

The army are going on how its a disgrace, but bloody infection control!! There are very ill children in that unit, you can't let every Tom, Dick and Sally in off of the street

^^^ this

I worked in a hospital when an MP was brought in with a heart attack, there was a request for the then PM to visit, it was turned down because only immediate family were allowed in CCU.

Ca are posting videos of a young adult with apparently the same type of illness as Charlie which is Rrm2b. She does state she has Rrm2b. However I thought all with Charlie's type had died? The girl mentions it's secondary Rrm2b as opposed to primary. Also it seems to depend if it's homogeneous or heterogeneous. There seems to be a wide range of factors.

Dh just told me I'm "too involved" in this. Because I've need reading bits of the fb page and this thread and the news. Maybe I am.

Is it wrong that I'm finding it fascinating what people will do for someone they don't know? (But inner the members of ca wouldn't help refugee kids from Syria...)

I think this is fascinating from a medical ethics point of view. I think it's generated discussion about 'when do we stop?'

I think the parental rights issue is an interesting one, personally I don't think parents should have the ultimate say over their children. My Mother doesn't have that over me as an adult, so why should I have it over my child. If I was acting in a way that causes harm to my child, you need the protection in law for authorities to do something about it. You can't say that you want ultimate authority, and then in the same breath cry foul over issues surrounding abuse and neglect. We can't have it both ways.

On now.

Poor woman sounds shakey. Still slagging off the hospital though.

I think this is fascinating from a medical ethics point of view

Me too, but I think people are missing a massive part of this.

The life sustaining treatment involved is very invasive and medical professionals are carrying out these interventions. Medical professionals who do not think that the things they are doing are wrong and are effectively harming a baby.

Parents rights do not count here because parents aren't keeping him alive or meeting any of his needs and that will not change. I am sure they would if they could but they can't.

Thanks to the pp who linked to the RCPCH statement.
Also thanks to GlitterDustFairy for the informative posts.