Charlie Gard 7

[CaveMum]

Continuation of the discussion.

It looks highly unlikely that there will be a verdict today as GOSH have not yet been able to put their case across. The Gard family had their position heard this morning and currently an expert witness from the US is being questioned via video link.

Natasha

Sounds like the Freeman of the Land loons.

www.mumsnet.com/Talk/am_i_being_unreasonable/2095211-to-think-the-common-law-freeman-on-the-land-thing-is-a-whole-load-of-bollocks#add_message

????

Sorry Bubbles was in response to NatashaGurdin upthread a bit who asked

What is this obsession with the Magna Carta as a cure all for all ills? I've just been arguing with someone on FB about the fact that the concept of 'Lawful Rebellion' does not exist and that only three clauses of the MC are still in use!
Freemen of the Land have popped up supporting CA - they contend that British Courts are unjust and it's all because of Magna Carta.

If you have time, have a look at the linked thread. All is explained. We even had a few Freemen post on it. Mostly in SHOUTY CAPITALS

Just one more CA post before bed, eh?

"There all so stupid that they can't even see that Charlie is thriving. They all need to go to specsavers..."

Night all. Thanks for your company today.

I haven't followed this case. I've been aware of it but I don't live in the UK. I saw a wee little boy on the news earlier, anyway
Can they not travel with him? Is he subject to a court disorder?
Can they change his hospital? Would he die if they moved him?

Poor wee boy, and my heart really goes out to his mum and dad. But.

ava

It's not as easy as him just going to the US. If it is not in his best interests, they won't move him. Currently, it seems that it is not in his best interests and would cause him unnecessary pain and distress.

No other hospital in the UK will take him, probably because they don't want the legal hassle. Besides which, GOSH is the best children's hospital in the UK anyway...he couldn't be in better hands.

That's the tragedy here.

CA are posting selfies of them measuring their own heads, with the hashtag #iamcharliegard.
I mean could they make it any more about themselves?! 'Charlie is like my own and Connie and Chris are family.'
No! They are not!
CA is making me lose faith in humanity. I don't know why I've looked at it again. A lot of them seem a bit mentally unstable.

The court case looks set to rumble on a little while. I guess it's better than a quick decision and then another appeal (if that's possible) or other delay. At least if all options have been considered and / or acted on then it means it's more likely a conclusion will be reached.
I cannot believe it's gone on as long as it has really. It's awful for everyone involved.

ava

Charlie is on a vent which means he cannot breathe on his own. Travelling even short distances is difficult for him.

Gosh is the best children's hospital in the U.K.

The worst CA post is the one where someone has put a side by side pic of her child and Charlie claiming they are same age and size therefore he's "developing beautifully".

This is then commented on with other baby pics from different CA members and various he's thriving, he's perfect, apart from the tube he doesn't look ill, his head is the right size, it's growing.

The person who started the comparison pictures then says "there's nothing worse than people trying to give medical advice when they don't have a clue"

Oh the irony!

God creates mitochondrial disease according to creation theory, God gives horrific mitochondrial disease to baby.... doctors prolong life with ventilator....due to suffering doctors want to take away ventilator and not subject baby to an untried experiment....they then get accused of playing God by Pope & Trump....who preside over deaths of thousands of non-white babies with no worries #headhurts

I think the Judge is making the mistake of thinking Connie and Chris can still be reached with logic

I'm not sure it is a mistake. As you accurately said CA is part of a vicious circle that is helping paint the parents into a corner.

However if the American scientist meets with GOSH two things could potentially happen.

-He might, in the face of extensive expert opinion, agree that the brain damage is an irreversible issue that his treatment cannot repair.

-He may be asked by the judge to outline for the court what improvements he would expect in real terms. i.e. See/breathe/feel/communicate/move, and to what extent.

CA seems convinced that the brain damage does not exist and the treatment will give Charlie a measurable (in lay man's terms) improved quality of life. As do the parents.

If their own guy, the scientist they have been raving about, turns around and confirms Charlie's brain damage AND lays out that any hoped for improvements are interesting from a scientific perspective, but not exactly a heartwarming resolution from a lay person's perspective ... the vicious circle may start to melt.

Or it could all go "GOSH got to him/.paid him off/.the government threatened to hurl into the Tower of London for life".

I'd certainly expect some of the latter. But do hold out hope for the former.

Actually quite a lot of hope. Apparently he has been named in the American press. Right at the beginning of proceedings it was stated that some information was "commercially sensitive" and having had a poke around on google there are some patent applications for treatments of the kind being discussed. The guy came accross a little cold yesterday, like he saw Charlie more as an interesting test subject rather than a tiny baby. It's possible that he can't afford to taint his future patent and its saleability with a tinge of inhumanity towards helpless babies. Some people (politically or ideologically motivated) will run with that and possible poke a "Mengele!!" style finger at him and his work. The potential PR fall out might be more than a high profile test subject is worth considering the amount of money that may be resting on this project.

Pretty much I think there is every reason to be optimistic that the American scientist is motivated to take as humane a look as possible at the evidence to support Charlie's condition and prognosis and err on the side of caution in terms of what he promises those who are hoping he is the key to saving a baby's life.

I can't climb inside the judge's head and I'm certainly no legal expert, but I think that tiny glossed over detail about "sensitive commercial details" may have helped shape the judge's choices in terms of how he deals with the American scientist. The judge appears to be doing his damndest to put this case to bed for once and for all. And part of that probably is giving the parents and their supporters every chance to look at the reality of what is being offered, rather than a hope infested fantasy. IYSWIM.

There's a post about the abuse that's been given. Only focuses on direct attacks on GOSH staff rather than posts against the legal teams involved. And the majority of people believe it's just been posts on the GOSH Facebook page and that the posts have been deleted so they can say it wasn't them and that CA is about love and peace etc. And there's a handful of "this shouldn't have been mentioned in court as it's nothing to do with the case" type posts too.
One person has mentioned and attached a screen shot of one post made within CA but most people seem to think it's trolls posting elsewhere not within the CA page.

Does anyone know when C+C found out that Charlie has mitochondrial disease? And how they found out he had it?

Yes when he was 8 weeks he was failing to thrive and couldn't lift his head. They were referred to GOSH where he deteriorated rapidly and basically he has been there since.

For very personal reasons this case is very close to my heart.

I had a look at the CA facebook page this morning - I wish I hadn't. Boy can they contradict themselves within the space of a small paragraph, it takes all sorts but really you would think some of them could check their facts first

Thank you LapinR0se I just wondered how long it was before something was detected and if it was just a complete shock for them.

I think the most obvious result of this is that hospitals in possession of a court order where appeals are exhausted are likely to act on that very quickly , whether it's to treat or withdraw treatment.

It seems as though the original request to deliver the new evidence by 27th July may now happen by default if there's going to be a delay and possible visit.

It's inconceivable really that they've managed to get it back to court based on not much more. I guess this proves that the 'system' is the very opposite of 'keen to kill off babies.'

What I wonder today is what the characteristics of the people who had the nucleoside treatment were. We're they adults? Moving, speaking? How long ill, what onset, what prognosis, what differs the strain they had from the strain the baby has? Basically, how applicable is that 10%?

The American scientist has again highlighted the huge chasm between our health systems and how we view healthcare as societies. There is no way he would get involved without being financed, either by an insurance company, a pharmaceutical company, a charity etc. Also I suspect he would want to control how the data gathered from his experiment would be used - normally this would be kept confidential until published in a journal etc. The idea that he should have just popped over months ago to see Charlie is almost as deluded as the CA ones - he had no incentive.

@annandale I wonder that too.
Because Charlie was just 8 weeks old when diagnosed and has not developed past a newborn baby, even having this treatment, IF (and that's still a big if) it did stop him from deteriorating further, is that what they want for him? Forever a newborn baby who cannot develop?
It breaks my heart.

Morning all. I think what yesterday proved was the research into new treatment is in its infancy, no real proof especially as no subject with Charlie's condition has been treated with it, he would be the first. No experiments on mice with Charlie's pacific disorders has been done, so again, no hard evidence. It has come too late anyway for Charlie, but in 3 years time with proper rigorous testing, a proper control group it could be the wonderdrug it professes to be. Charlie does not have 3 years.
Brain damage to the extent Charlie has is irreversible. People have to realise that although medical advances are going really fast we cannot, CANNOT, cure everything. And you cannot, CANNOT have your own personal way in everything.

Forever a newborn baby most likely in pain.

The parents have already said they don't want that, way back when they were still sane, but reference to that prompted an emotional walk out of Court yesterday. That's how far they've come, poor things.

I do not envy the judge one bit. I wonder how much sleep he has been getting? I am sure he has a plan in mind, but it must be so difficult to navigate through this evidence when the experts themselves don't even seem sure of of what they are arguing for or against. "More than zero" "might cross the BBB" "Could strengthen muscle" "Somewhere between 11% and 56%" and yet, somehow, somewhere, in all of that, his mum has formed an image of a perfectly normal boy, running around and riding a bike?!

I think Connie came out crying yesterday because she realised the benefits to Charlie from the new treatment would be miniscule and he won't be riding a bike any time soon. The question is will the parents have the courage, yes, courage to now let go of their precious child? The judge is hoping this will happen and the parents take the dreaded decision themselves. IMO I do not think they will. With the ca mob screaming they are indeed, in a corner. What will be more important? Who knows. They seem to me not to have the courage to do right by Charlie because they love him so. They have fought bravely for him, their love is in no doubt, only their reasoning. It us such s dreadful situation but they really must,MUST now let the court make that decision AND accept it. They have done their best, now Is the time for dignity and peace for Charlie. They must put their will aside.

I wrote my post above before I saw this on CA (see screen shot). Note the number on Charlie's backpack.

I think one potential, beneficial outcome of the court ordered meeting and less distanced participation from the American scientist would be the melting of that kind of fantasy.

As a tightly held (but unrealistic) hope it is definitely providing fuel for both the parents' and CA's determination and ire. A multi-expert (including the family's own) agreed, realistic assessment of the best case scenario the treatment could offer might go some way to bringing people back to looking at what is possible for Charlie, rather than what they immagine it might look like.