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.

Yes thanks mucky, not very mobile today but up and running sort of lol! I could do a
with the expert to come and cure my muscle trouble (distonia) which is bloody agony.

I am worried that the meeting maybe stopped and yet more time wasted.

I thought infant mortality was treated differently in each country so it is difficult to compare ie in USA very premature babies are included whereas in some european countries they will not be included hence the difference.

You're correct brasty, but that tends to make more difference to perinatal mortality. Where the US is not significantly worse than other developed countries, despite the fact that they count it in a less favourable way. Yet their infant mortality stats are still poor for a country so rich, which suggests something is happening inbetween the immediate postnatal period and the end of the first year.

That's right Misshavisham

Today the Dr from NY is seeing Charlie. The experts are having a meeting. There is a directions hearing at some point this week for the legal teams (this just guides the case) and the final hearing is 24/25 July.

Whatever way you look at US health system it is ruled by money. If you have plenty you survive if you haven't then.... And they charge exorbitant amounts of money which may not be equated with good treatment.

Sostenueto, I hope you not suffer too much sweety x

Thank you.

Does anyone think Charlie's parents are aware of the damage they maybe causing
inadvertantly as regards the law on children's rights?

I don't think that's their problem or issue at all tbh. If the law isn't robust enough to manage it needs to be reviewed.

I have swung from worrying about precedents to thinking they have every right to pursue what they believe is right. I think the choice of lawyer for the guardian is extremely ill conceived in such a public case as the perception of fairness is of significant importance. I also feel that they feel their chance was missed - the delay for procedure in gaining permission to let Charlie receive the treatment and the awful onset of seizures - what a missed opportunity they must feel has happened and I feel desperately sorry for them.

This isn't as straight forward as no hope at all, it's more 'tiny hope slipped away'.

Mucky sometimes simple things like sitting in a green space foe a bit can help, under a tree, making yourself switch off. I have my elder son home today so going to the spa later, which will be a treat.

On the subject of press, my DNiece had a brain tumour as a baby and was a kind of miracle recovery, after surgery. SIL did one lovely photo of her dancing, after as a toddler and this got picked up on by all sorts and she said it was awful, people ringing, offering money for articles, they had to turn the phone off! Sounded stressful. And they didn't try for such publicity.

mucky

I don't want to teach my grandmother to suck eggs.

However what you are feeling I get regularly. I have ADHD, with hyperfocus as my super power downfall. And I know how horrible it can feel.

It is easier said than done, but stepping back for a proper break is the best way to not only ease the emotional over-involvement, but also clear your mind.

Seems counter intiuative, but something light hearted and funny until there is any real new news to consider, is your best bet to vaccinate against ending up being unable to see the wood for the trees.

There are some nice threads in active. Maybe have a go and see if you can give your mind a break from turning things over and over.

Really honestly not saying this as a criticism/finger wag. Am not in a position to do so. Cos I am a repeat offender. Just offering something I know can work when interest in an issue becomes too tightly gripped.

Does anyone think Charlie's parents are aware of the damage they maybe causing inadvertantly as regards the law on children's rights?

I suppose the other way of looking at is parents like these are the reason we have laws in place to protect children and their rights in the first place, which is a good thing in my view.

Distonia= constant agony
Big C= can't tell how much pain because of the bloody agony of distonia!
Can't see game of thrones till this afternoon= super agony!

Noeuf, they will be causing terrible damage to childrens rights and opening a huge tin of worms of this happening time and time and time again.

All this time they could have spent with their precious dying baby, but they have chosen to do all this instead, if the decision is made,which i think it will to turn off life support, they are really really really goong to regret the time they did not spend with Charlie and that will be devestating for them.

0nline, Asd and Adhd run in our family, I probably think I have a touch of something, i can be really terrible sometimes but not letting go of things, especially when it comes to issues like this.

No I think Mr Justice Francis will make sure there's a sensible outcome in terms of repercussions.

Sostenueto, it cant be much fun that at all, Iam not going to say I pity you because thats crass, but I do really feel for you, is there a cure for the C? what I mean is how is it going?

I really need to shave my arm pits................

True Ellie that's why I don't want it jeopardized by this case.

The Times legal section "The Brief" is reporting that the judge would ideally like all the parties to agree at the forthcoming meetings on a course of action. I think this may be wishful thinking, but we shall see.

Regarding Barristers. All the barristers who represent clients in cases like this a family barristers, not criminal barristers. When you get to be a QC, or near to being a QC, you will have carved out a particular specialism. You are an expert in advocating in certain areas of family work. There is no reason why barristers cannot lend their support to organisations they believe do excellent work. This does not alter their relationship with the client or their ability to advocate for their client. The barrister is working for the Guardian, not anyone else. If the Guardian is happy with the appointment, then that is all that needs to be agreed. Her background is nothing to do with the parents.

Barristers are also self employed so they have certain freedoms that employed people may not enjoy. Their background and interests makes each one an individual and adds to why a particular barrister may be the best in a certain case.

Happened to read this today- interesting to hear this man's view on how he feels.

www.bbc.co.uk/news/health-40615778?ocid=socialflow_facebook&ns_mchannel=social&ns_campaign=bbcnews&ns_source=facebook

Is the meeting today? I know the US doctor will be seeing Charlie this morning.

Muckypup I really don't agree. They are testing all the appeal routes but no one has suggested doing away with guardians or that they are correct legally in what they argue.

I also think it's not your call on what they will/won't regret: you could just as easily argue that they would never be able to live with not having tried everything.

Sos do you have some painkillers lovely? Maybe they can get a pain clinic to help...kind thoughts x

I have each day- amitryptilline helps a bit, things like tramadol might be helpful also?

Noeuf,it is not my call, to say they will/not regret it, but I certainly know thats how I would feel, and yes they may regret not trying harder, but they have tried and meanwhile all this timeis spent in court, doing interveiws ect, theymay regret it, they may not.