what ever happened to the This Is my child campaign?

Your viewpoint is perfectly valid and reasonable, zzzzz and thank you for voicing it.
I think where the clash has occurred is that some posters feel that Charlie's case is a disability one, whereas others see it as being primarily a terminal illness with no hope of recovery.
It's not about quality of life. I fully understand that a debate about that can often not take into account entrenched disablism in society. I consider MNHQ's actions (deletion etc) where this has happened to be appropriate.

We aren't going to get anywhere with shifting perceptions about disability with TAATs and personal,attacks, sweeping generalisations about 'all posters' etc.

The mother of my relative with PMLD commented on how rarely you see images of children with PMLD in the public sphere - e.g. they would rarely be used for marketing etc. She felt it's because people don't want to see children like her lovely son. it would be nice to see an everyday family dealing with the reality of a severely disabled child depicted in the occasional advert etc.

I' ve read the link to TIMC. I have to say I'm completely baffled as to what is has to do with discussing the Charlie Gard case

Because the majority are 'right' don't you know, making assumptions about things which have yet to be decided and making sweeping generalisations about the worth of a brain damaged life

But, if you had read the threads, Bishop, you would know that this isn't the case. You blame someone upthread for making generalisations about the people posting there, but you keep doing it yourself.

Like any thread in MN, it features people who come at it from all different viewpoints. I, for example, have never been on the FB threads, and am principally interested in the legal and ethical issues; including the difficulties that have been thrown up by the involvement of social media. But you've decided that, apparently, the post is fully of people who fit this characterisation when the evidence simply doesn't bear it out.

I thought the dr from us had said the previous scan (not the recent one) showed no clear evidence of irreversible brain damage. We don't yet know what he thinks about this scan?

It isn't what he said, if you look at the judgments. An early MRI scan didn't show such evidence, because it is the nature of the cellular damage caused by this illness that it won't; however, he accepted that the EEGs showed severe encephalopathy.

Sorry, I am going to do that annoying thing of saying, 'I'm out' ....and then coming back in.

I just wanted to point out 2 things

1. This is now another thread about the CG case
2. If the TIMC campaign is dusted off, there will just be another rehashing of all the arguments and niggling that there was at the time over the actual campaign itself, it disappeared up its own arse before it even became a thing (for me anyway), and sadly lots of people on the sn boards left afterwards. I have no issue with MNHQ, I think they were trying and do try to be as supportive as possible.

The link earlier from Polter is really good.

Really thoughtful and worth reading.

The 'this is my child' thing seems to have become 'this is someones child' and then 'this is their child'. TBH I suspect it's less to do with personal convictions of those involved, and more 'this isn't an easy PR-able campaign' and slooowly it slides into obscurity.

Not dead, just forgotten, and unloved. More, consigned to the back of a cupboard than put in the attic, I hope?

Maybe it can be brought out of the cupboard and dusted off?

Yes they are obviously desperate and my thoughts are with them and their little one and family. I just hate to see them looking so awfully upset and cannot imagine how Id feel in their position.
It's up to the courts too decide though and not social and mainstream media.

cross posted again

No worries. I'm going to bed in a minute but my understanding of the factual position is:

• GOSH believe he has irreversible and serious brain damage
• US dr was more equivocal
• US dr believes his treatment can deliver 10% chance meaningful improvement
• GOSH think not.

The US dr will give evidence. The judge will decide and then we'll know.

I don't think anyone is judging the parents here. Their despair must be all consuming and despite objectively finding their behaviour sad, I can't spend one second judging them for it because what they are going through is the epitome of a living hell to me.

What I strongly object to, as do many others, is some of the public attitude surrounding the case, particularly the CA movement which through social media are bullying and abusing GOSH and any other people involved in the Charlies case who do not agree that it would be ethically sound to move him to the US for experimental treatment.

Haha, sorry cross posted, there is a lot of "Yes but" going on here.

Yes but as I said the debate isn't about what his current state is, its about whether it is ethical to treat him once you way up his current state vs the realistic chance of any improvement, is all I'm getting at.

Yes but people who believe their child shouldn't die do many desperate things including remortgaging their house for last ditch treatment etc. I am sure they were desperate.

Yes but all the furore is upsetting

But if they hadn't Portia Charlie wouldn't be alive now, so with their view on the situation you can see why they did.

I think there is a debate and my understanding is that there is as yet no evidence from the us dr on the latest scan so we don't know what his perspective is. That will become clear on Monday/Tuesday.

I so wish little baby Charlies Mum and Dad hadn't gone public then all the frothing of armchair physicians and stalking of fb would never had happened.

Ann

The latest I have read (from today) is that the scan makes for "sad reading" and that the parents were very upset hearing the results (apparently Mr Gard said they were "evil", so what I'm gleaning from that is that Dr Hirano may be agreeing with the doctors that very little can be done to change Charlie's current condition.

What I have read given as the reason for the new hearing is that he is maintaining that there is a small chance the experimental therapy could improve Charlies condition enough to make a "clinically significant" difference in his current state. There is as far as I'm aware no debate about what state he is currently in, regardless of previous MRI's, but I could have missed something.

@MyrtleMaracas
Not trying to derail the thread, but could you please explain?