Charlie Gard 10

[user1498911470]

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"

Starting now as 9 will fill up quickly.

YY to deux last post. That's my point. I can see how you would think that and part of the issue here is going to be communication and coming to terms with decisions and understanding how and why they were made.

Think your right RABBIT.

That's brilliant rhodiola

rabbit. I know I've been on nearly all of these threads.

I think Nouef's point is valid as it's often been wondered on these thread how the situation could have become this conflicted.

great news @rhodiola thanks for letting us know

Look simple way to say this is... You cannot click your fingers and expect every demand you make to be fulfilled. When dealing with anything medical protocols have to be gone through for the safety of the patient ( top priority) and for your own sake ( making sure you don't break law or leave yourself open for lawsuits). You can't go round willy nilly dishing out untried drugs just because a parent wants it done now! This attitude cannot be applied in anything to do medically.

Bottom line though, as i understand it, is that the nucleosides will not work in charlies type of mito if the cannot cross the bbb.

Presumably that is why this case is different to others that have recieved treatment. It's still an experimental drug and would it be ethical to give when the chance of it working are miniscule. Particularly as the definition of "working" seems to = "making very tiny improvements"

Our society is too much ' I want, I want, I want it now'.

My gdd is keen on doing neuroscience among other things she is considering to do. She would make a fantastic doctor but she has been following Charlie's case and she said she may just become a forensic pathologist instead because that way you have less chance of being sued or abused!

Thanks Rhodiolia for the news of Lonely and Ballerina. I'm so pleased to hear it.

Off now as dd here to take me for pub lunch then back to hers to watch GOT. Take care be back later and be good!

Not all doctors get sued or abused! If everyone did I can see why people would run a mile - like social workers have. Generally doctors are respected and cases like this are rare. Wannabe Bartisters may think the same!

Great news about Lonelymummy and her charming little Ballerina. Thanks for letting us know xx

Sos, the Spice Girls have a lot to answer for

Good news about Lonelymummy.

Is the underlying problem to do with reason and rationality? I think there are fewer and fewer people who are able to put emotions over there and engage their reason.

I get what you're saying Deux but if anything the whole point of GOSH STARTING the process lays the current accusations that they have never wanted to save Charlie or give him any chance as lies. He deteriorated to beyond a point where any benefit from the therapy was not going to happen. Yes I'm sure there are a million 'what ifs' but WHY is the fact that GOSH we're prepared to go down this road being ignored?

Sostenueto - My gdd is keen on doing neuroscience among other things she is considering to do. She would make a fantastic doctor but she has been following Charlie's case and she said she may just become a forensic pathologist instead because that way you have less chance of being sued or abused!

Please don't be put off it's one of the most fascinating disciplines around:)

www.neuroscience.cam.ac.uk/

My final module before my dissertation (in September) is neuroscience, it's possibly my favourite area (even before it was personally relevant).

MissTify, I would say, perhaps we need to waitand see what the doctor from the Usa says, because he has previously said charlie was not suitabale for the treatment.

GOSH consulted at a much earlier stage with the US Dr and one in Barelona. Way before the first court case in April. At that time they all thought treatment was futile due to Charlie's condition. It has never been the case that GOSH did not consider the experimental therapy. However it had never been tried on anyone with Charlie's exact condition and they would have needed permission to do it. When the US Dr agree it was unlikely to work, the court agreed that the overwhelming evidence supported the view that Charlie should move to palliative care. The court and GOSH acts in Charlie's interests, not that of his parents. That is where the great differences lie. This is why it is back at court again. The US Dr still has not treated anyone as ill as Charlie and indeed earlier in the year, declined to see him. Papers from GOSH were sent to him but he didn't visit.

In those circumstances it is difficult to why GOSH is remotely at fault.

Haven't kept up with the thread sorry so apologies if already posted.

Thought this was an interesting summary of the issues at the heart of this conflict though:

www.facebook.com/RussellBrand/videos/10154828430978177/

BubblesBuddy, I think thats probably why some of us probably feel as strongly as we do, especially given all the threats against a wonderful hospital who save hundreds of thousands of sick children year in year out, that as well as other reasons.

Please allow me one self-indulgent post - I need to vent.

We've had a suicide in our family overnight. He was a person highly respected in his field, it's getting a fair amount of press coverage. I'm trawling through twitter and news sites reading his obituaries and see story after story popping up about Charlie, now the Victoria B-C "outrage" etc. and I'm just feeling enraged. That poor baby and his ill-advised parents are shoved (shoving themselves!?) into the media spotlight day after day. For what? Others suffer loss and grief. Children die every day from preventable causes. We have a mother, brothers, sisters, a wife and children suffering untold grief today. I'm babbling, sorry. I just feel that Charlie's case is so very damaging in many far reaching ways. He should have died weeks ago, peacefully and privately, in dignity, with the love and care of his family and without lecherous American lawyers and pastors gurning at his bedside and his bodily functions splashed over every news site in the world.