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Original poster

Charlie Gard 10

999 replies

user1498911470 · 15/07/2017 23:26

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.

OP posts:
Thread gallery
9
meddie · 16/07/2017 13:11

It could technically allow increased respiratory muscle function so he may breathe or breathe insuffuciently to come off the ventilator. If his breathing centres within the brain are not also damaged

Maryz · 16/07/2017 13:12

This reply has been deleted

Message withdrawn at poster's request.

Writerwannabe83 · 16/07/2017 13:14

"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."

This worries me because it highlights again the question of how much should children be allowed to suffer just because their parents are happy for care for a child who has a life of little or no quality.

LikeAFish · 16/07/2017 13:14

"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.

Which in no way considers the quality of life of a severely disabled child. Or the long term care required. Will CA still be interested when he grows up and isn't cute anymore?

Writerwannabe83 · 16/07/2017 13:16

"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.

That's the quote that my above post is in relation to, for some reason I initially cited the wrong paragraph.

unbuckle · 16/07/2017 13:17

That story in the Mirror is heartbreaking. Portrayed as how doctors got it totally wrong. Three years later he is starting to smile.

TheWeeWitch · 16/07/2017 13:17

@LovelyBath77 It's worrying as presented, but I'm skeptical about someone who thinks they can so broadly speak for the wishes of other parents.

The article also says "... the hospital backed down after Gabrielle said she had seen movement not detected by doctors.
She said: "I provided them with proof and they backed down from going to the High Court."

This is a key point of difference with Charlie's case. The parents do not seem to have the same kind of proof that this lady did.

MontyPythonsFlyingFuck · 16/07/2017 13:17

Here's an article by Melanie Phillips which is rather good in defence of GOSH, and also sets out just how flimsy the 10% and 56% claims are (they are based on a tiny set of results on patients who all had a different condition to Charlie's):

www.melaniephillips.com/calumny-great-ormond-street-hospital/

NellieBuff · 16/07/2017 13:21

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

I remember right at start of this and at one of the very first hearings I remember reading an article about the hate mail the family were receiving. It was very interesting reading but although I have been trying to locate it for folks I have been unable to do so but I will keep trying if folk want me to,

On a completely separate note one of my DC has just come back all rattled having spending time at a friend's house were the mother got tore into them because of this case and our view on it (i.e. mine and DH). I could be very wrong (and won't be the first time Smile) but emotions will keep getting more and more extreme until this is resolved and common sense is beginning to fly out of the window regardless of what side of the question you are on.

MontyPythonsFlyingFuck · 16/07/2017 13:23

And I've thought long and hard about why I am so interested in this case, as another person who has read every post on these threads. I think it's to do with being disturbed at just how easy it is to whip up a frenzy based on entirely incorrect (and easily checkable) facts. We saw it with Brexit, we saw it with Trump's election, and we're seeing it again now.

LetsGoFlyAKiteee · 16/07/2017 13:23

Oh right. Thanks for clearing that up :-)

Just hope it the Doctor does give bad news that there's a proper support network in place. Away from social media. To pin hopes onto a person and be dashed be heartbreaking for them

DorotheaBeale · 16/07/2017 13:26

"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."

But it's not about them and what they want. It's about what's best for the child and his or her long term prognosis.

MissHavishamsleftdaffodil · 16/07/2017 13:35

As far as what's been put in the tweets from court, the US Professor put it as:

50% chance of the medication crossing the blood brain barrier for Charlie. (very significant as his condition has brain involvement the other patients treated with this do not)

11-56% chance of clinically meaningful improvement in muscle strength seen in patients with the other version of this condition

10% is the 1 in 9 patients who has managed to be weaned off a full time ventilator. Some of the other 9 have managed to reduce their time spent on ventilation per day.

When asked if this could potentially help Charlie who has the brain damage and encephalopathy the patients treated do not have, his answer by video link was the only way to know was to try it and see what happened.

GriefLeavesItsMark · 16/07/2017 13:38

I thought the protests were outside the court not outside? The former, I think, is fine (Pita, but still ok) the latter, unacceptable.

Sostenueto · 16/07/2017 13:41

Well you can't just try it and see what happens for goodness sake, this is a human being we are talking about not a flipping lab rat! What if Charlie reacts violently to it? What if he has n allergic reaction? What if it causes more fits and more brain damage? The what its are horrendous! This phrase the expert used is really quite frightening IMO.

Sostenueto · 16/07/2017 13:47

Also it is a shame that given time this new drug may work, when the right mice have been bred, when lab trials have been completed and verified by peers and then tested. This could take up to 5 years to do. So its a case that the research is in its infancy and untested, Charlie hasn't got 5 years to wait and this is the sad truth really. It is too late/early for the poor wee chap. You cannot give the go ahead on just what MIGHT be the outcome for Charlie as he will be the first to have it. And, as desperate as I might be to save my child I'm not sure I could bring myself to give my child something so untested. But I'm not in that situation so do hard to say really what anyone would do.

Jux · 16/07/2017 13:53

The other night they showd a documentary about firstuman trial of a new drug which went hrribly wrong, and changd the way first human trials are done here and in Europe. It was truly horrific; the most badly affected volunteer lost fingers and toes. Nothing bad was expected from using the drug on monkeys.

You really cannot use a small, uncommunicative child as a lab rat just to see what happens. You have to have a serious expectation of significant improvement of quality of life, in order to justify the risk.

Jux · 16/07/2017 13:54

first human that should say.

DorotheaBeale · 16/07/2017 13:57

This phrase the expert used is really quite frightening IMO.

I think he was responding factually to a question he was asked. That doesn't necessarily mean he thinks it's the right thing to do. He made it clear he doesn't know enough about Charlie's condition to say.

Maryz · 16/07/2017 13:58

This reply has been deleted

Message withdrawn at poster's request.

Jux · 16/07/2017 13:58

My keyboard is reallyplaying up. Apologies for ridiculous spelling! ?I really did click on all the right butos the right order!

Sostenueto · 16/07/2017 14:00

I remember my music teacher saying well done, well played the notes were all there but not neccisarily in the right orderSmile

Ellie56 · 16/07/2017 14:00

The family and CA are prepared to believe the worst of the GOSH doctors (and presumably all the others who agreed with them when the case first went to court).

How do they know the American doctor is not solely motivated by the prospect of having a human guinea pig for his drug? (Not suggesting for one minute that he is) This disease is so rare he isn't going to get the chance of another one any time soon is he?

Sostenueto · 16/07/2017 14:01

Necessarily lol!

Sirzy · 16/07/2017 14:03

Surely if there is only a 50% chance of the drug actually getting to where it needs to be then that automatically halves the predicted possible chances of any sort of improvement anyway? So if in patients where it hasn't needed to cross the BBB the chance of not needing a ventilator is 1 in 10 then in this case it would be at least 1 in 20?