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.

Hmm, can you block her on FB? perhaps. Can you also block groups, so they can't bring you in? Not sure Maybe others can advise. If they are on here they seem quiet! - at least.

I'm sorry you're being subjected to that, mucky. I hope that at least some of CA are learning as much by reading these discussions as we are, though.

We all need to think about these issues as they will grow in importance, and I for one need to learn better how to think critically about them.

The more we understand about how our systems differ from those inother countries, the better too. I had no idea that, eg, in the US, children were more like chattels. I hope some Americans gain a better idea of UK stance on that too. And how our health system works.

Wonder if GOSH were able to take new scans or not

Jux, I hope so too, perhaps they might learn something from this thread.

I recently read a letter by a consultant written on the Times in response to an article on people crowdfunding for cancer treatments. He was saying how sometimes this happens when the NHS says nothing will help, and how they need to look about people being able to use the money of drugs trials here, rather than going abroad to clinics out of desperation which can charge the odds. A different situation, but again it highlights how things could be changed in terms of options for patients.

mucky HTH

www.facebook.com/help/290450221052800/

This case will determine a change IMO on the procedure for such cases. It would also keep it out of the public eye a bit especially if from the beginning there was a ban on publicity at least during the mediation period and, if mediation goes well a court case may be dropped which would surely be in the interests of someone who's suffering like Charlie.

Oh look. There's some silly cow woman on FB who's asked who diagnosed Charlie with the specific strain he's been given, because she's had a look at google and reckons he's only exhibiting some of the traits.

God give me strength!

It's amazing how many people with zero medical knowledge have decided they know what's best for Charlie.

Oh, FFS (diagnosis) didn't they test both parents and they both have the gene? Or have they made it up! . Maybe they made that up too!

Jux it was the pastor's sister in law and he has to do the eulogy.

Ok, so this doc who is coming, professor sorry, asked at the last hearing, for a children's neurologist to say the extent of brain damage, as far as I remember, and also asked for other experts opinions about the extent of pain, as far as I remember. he said GOSH was an excellent hospital and he would prefer someone there to examine Charlie.

So, on the basis of that, how do you think tomorrow's meeting would go? Based on how many experts have already written reports previously.

I do not agree with personal attacks on GOS hospital or doctors, but the truth is the parents are being heavily criticized too for just trying to do everything possible. I'm sure many in their place would do the same. If Charlie dies on a plane it would be sad, but off life support he is going to die anyway. They have raised the money to go to America and I think that they should be allowed to go. If Charlie is on pain killers and also brain damaged (although that is not actually clear) it is very unlikely that he is aware enough to be suffering. It is true that at the moment he is just existing, but the parents still want to try everything, even if the chance of improvement is small.

So Lizzar what you, and others, basically want is what is best for the child and the child's dignity to be pushed to one side to allow for a traumatic journey just so the parents can grasp at straws for slightly longer?

Concerning american treatments. Has anyone read Elizabeth Glaser( wife of PMG Starsjy) book about her daughter and aids. She contracted AIDs from a blood transfusion at chilbirth which past on to her dd and ds. Although AZT was licensed for adults at the time , it was not licensed for children, so she could take it herself but not give it to her daughter. She fought for years to get it for the dd. Sadly Ariel died at the age of 8 and Elizabeth a few years later. That was in the early days of AIDS and i dont know how things have changed since. But back then it took years to get drugs licensed for peadiatric use even if licensed for adults.

Lizzy arrange it feels to me as if the wish for the baby to have the treatment comes round to my mind regularly too. The judge said in the first court judgment that he had felt it too. The first judgment was particularly helpful in explaining how he had come to rule differently.

Lizzarr not Lizzy. I hate my phone.

I've been lurking on this since thread one as I find the responses and opinions really valid and interesting. I've managed to avoid any shit on FB so far but I've just noticed a GOSH sponsored advert on my feed relating to fundraising and I cannot believe a handful of people reacted to it with the 'angry face'. When I looked at the list of people not surprisingly they all had some nod to Charlie on their profile picture (blue hearts, his photo etc) It saddens me that there is this level of hostility aimed at GOSH.

I can't even bring myself to look at the CA page.

It's so so sad for that little baby and his family. It's turned into a circus.

There wa nothing from judge to say the meeting should be kpt confidential by both sides was there?

im so worrid connie will come stright out and make a rash statement how thy all lieing again and want to kill her baby an of course they wont be able to defend themselves

I do hope that, when the meeting is concluded, Dr Hirano will take Connie's hand and tell her gently but firmly that, whatever he does, he can never make poor Charlie into "a normal boy".

If he thinks he can help then I trust Mr Justice Francis, who epitomises wisdom, will make his ruling, whatever that may be.

But it's not about doing what the parent's want, it's about doing what's best for Charlie. It's all very well saying he might die on the flight. How traumatic do you think that would be? You think it might be sad? What's about how the other people on his flight might feel? The retrieval team and his parents. And then they have to get him home. Which if you're abroad is not easy.

And what if the treatment in the US doesn't work how likely do you think it would be that Charlie's parents say 'oh you know what we've tried but it hasn't worked so we'll stop now, we'll just go home?' And where will they take him to? Back to GOSH? Don't you think they'll be on the Internet searching out some new treatment or they'll have someone contacting them offering some snake oil whilst Charlie gets dragged around America being experimented on.

There has to be EVIDENCE lizzar before you can say treatment will work, a bit. This drug has not been tested on ANYONE else with Charlie's TYPE of disease, charlie would , in effect be a lab rat, because it hasn't even been tested on mice in the lab because it would take 2-4 years to do that. The success rate quoted is using a very small group of 10 patients with a DIFFERENT type of mico and by what I see their quality of life us very questionable.

That's just hideous, LikeAFish, but it underpins this whole thing really. That is the reality of what they want to do.

Yes the judge was very clear there needed to be evidence.