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.

Guys someone has started this, please feel free to join. x www.facebook.com/hashtag/istandwithgosh?hc_location=ufi

I've made the mistake of getting into a discussion on the lack of head measurements on Twitter. Other party is adamant C&C haven't blocked scans and that GOSH are lying.

With regards dissenting voices using GOSH, are the beds there purely used for specialist referrals from other hospitals? Or do they have 'general beds' for routine ENT etc that are used to treat non specialist cases of local kids?

Each ward is a specialism, so cardiac, craniofacial, ENT, endocrine, oncology etc. It's a tertiary referral centre so only accept referrals from outside as it doesn't have an a&e. But there are also planned admissions, such as theatre lists. Patients can come from all over the world as well as locally.

Has anyone here seen that crazy person 'Susan Stathan' a fake profile, that keeps verbally attacking family members and close ones of Charlie on various platforms on fb. What ever your opinions on this case, harassing the family at this difficult time is awful.

Has anyone here seen that crazy person 'Susan Stathan' a fake profile, that keeps verbally attacking family members and close ones of Charlie on various platforms on fb. What ever your opinions on this case, harassing the family at this difficult time is awful.

I haven't see this, but that is disgusting. There's no excuse for harassing family who are going through this. I saw a comment under a DM fb article yesterday but I'm pretty sure it was from a man, it was absolutely horrible towards C&C.

Discussing is one thing - insulting the family directly and hassling them is not ok.

Nope that's not on at all the family is going through enough as it is!

I did see that comment and thought it was horrendous. Social media does unfortunately bring out the worst in people. I just can't believe people would try and debate with direct family members or throw personal insults. No need to beat someone who is already down.

Still here lovelybath!

Good

It is kind of regretful they ever let this get as public as it has done, especially with regard to FB.

I would have been disgusted, upset and angry at my son's illness and death being discussed in the media and society in general. I would have hated my parenting skills and my decisions being pulled apart, being judged for my decisions and the piss taken out of my family and friends for any perceived lack of education.

However, I did not court the media and seek publicity. Whilst I have immense sympathy for the family, I do feel that when people obviously put themselves out there, then they are exposing themselves to people's judgement and opinion. If you don't want that, then keep your business private.

Saying that, though, this case has highlighted so many issues that need to be discussed in our society - namely the power of social media, of the need for critical thinking skills to be taught not just in school, but in the wider society, the way that emotion has replaced rational thinking. There are people who just seem to lurch from drama to drama and who seem to compete with others to feel the most, to be the closest to the family concerned.

Personally I find these threads helpful for me just to make sense of this world.

Have family here and its hectic so will be in and out when I get a chance. Will be on tonight when all have gone home.

zeezeek very good post and I agree 100%. This case has highlighted so many issues that are definitely worth discussing.

I would agree that the threads could be moved to News, I really hope they can keep running as I am learning so much.

Anyone see the message on CAtelling C & C not to give up, and sharing this story? Thing is, her child doesn't have mito..

More false hope.

Connie Yates and Chris Gard, fight for Charlie. There are living proofs that doctors can be wrong! Don't give up! 💙 prayers!

www.mirror.co.uk/news/uk-news/mum-who-stopped-great-ormond-10807991

Yes, it is very easy to simply close a FB group at any time...it is their choice to continue with it.

The initial interest from the media was through the fundraising campaign. I agree people should be able to discuss this, but we need to step back and remember that the family are not fictional characters, they are going to have to live with this for the rest of their lifes.

Do find the social media side of this sort of interesting. Not in a sneering way but just seeing how one persons post take the morphine for example can them have so many people agreeing with them. I'm sure if they'd posted it's fine then people would agree with that to. Then you have the protests and everything else. Think it is people wanting to be part of a cause and not wanting to argue the other way. Want to be seen as doing something then if he does go to America they can feel played a part in something huge

If was a parent involved in this however I'd be slightly disturbed especially people declaring their love for my child and getting tattoos etc but guess more things to focus on.

We've had a few reports suggesting this could be moved to In the News rather than AIBU and we agree this might be a good idea, so we'll move the thread shortly.

Thanks Mumsnet!

Just read in that article linked to-

*"During our time at GOSH intensive care in 2014, many babies died.

"Many of the mothers told me they felt bullied, pushed into a corner by the doctors and just couldn't fight any more.

"I don't understand why those like myself - and Charlie Gard's parents - who want to fight for their children, are not given an opportunity to do so.

"If we're happy to live with a disabled child and live with what we know will be a struggle why can't we have that? It's our decision.*

Anyone else find this a bit worrying? The implication they just let babies die? Feels a bit worrying this might influence other parents. I'm sure GOSH don't make these decision lightly.

Didn't their publicist say they approached the media on the parent's behalf?

I'm bit lost over the whole improvement chance.
Has the USA Doctor actually said there's a 56% chance of improvement or that been made up? Bit of a leap from 10 to 50 to 56

My interest in this thread relates to my job. I work in a related area (I am not a professional or a carer, but work with people who are).

Sometimes parents, whilst wanting what is best for their children, lose sight of what the best actually is. Facebook pages full of friends, family, and strangers calling my lovely, hard-working, devoted colleagues 'heartless cunts' etc, just makes things more difficult all round.

Phew Sostenueto it wouldn't be the same without you.

As far as I understand it theres a 56% chance that the drug will cross the BBB. and a 10% chance that he will gain some muscle function.
The question remains, if his brain is severally damaged then even if the drug crosses the BBB then it wont repair the damage, so he will not have an improved quality of life and if he is indeed fitting repeatedly (and end stage mito fits are usually hard to control with anti fitting drugs) then a 10% increase in muscle function may only allow you to see fitting and not any purposeful movement

she reckons the family have been getting hate mail, not sure I belive that tho

There are 2 sides for this case which is why it went to court in the first place. We have all seen how emotional and vitriolic one side has got. It is highly probable there are people with opposing views who feel they are entitled to be as equally vile and hostile towards the family.

It is as inexcusable and as unacceptable as the hate and vitriol directed towards GOSH, but as zeezeek said this has come about because the family themselves courted the media and put themselves out there.

Some of the " hate mail" could actually just be people expressing different views from theirs quite rationally.

LovelyBath That story's in the Mail on Sunday as well.