Charlie Gard Case 4

[LovelyBath77]

A new thread to follow on from the others about this case

Thanks Darthmaiden and Ellie56.
So it's all 'mights' and 'coulds' then? My DD has MS and we have lost count of the number of things that 'might' or 'could' help her condition. She refuses to read articles containing those words now.
Meanwhile, I've got some lovely Schlange Öl...

I know it may be a bit crass to ask but where do they stand on the tax side for all the donations Connie has recieved directly to her account?
It would be horrible to go through all this and then they're landed with a tax bill.

Anyway. I have no time for these sad little women. Perhaps they should put their time to better use and do some charity work instead of being a sad loser trolls with no life.

Posted by CA member. Ironic.

Nina- most of the money has been donated directly to connie via bank tranfer and paypal. There is nothing that dicates how they spend that money, and the known amount raised through just giving.

They can spend it on whatever they choose to.

I reckon they'll keep the money, and use it to finance the birth and possible care of any further children in the usa.

They aren't US Citizens, and given this is already a pre-existing condition I doubt any insurer would touch them.

They apparently are going to give the money to a mito charity if it can't be used for Charlie. Saw that somewhere.

If they went on to have another baby, I wonder if they can test in utero if the child has the 1 in 4 chance of the disease, it is quite good odds they could have another child who was OK.

As far as I understand things, the 7 doctors are mostly Ph.D holders rather than medical doctors.

As scientists they spotted something that was possibly wrong about the information given to the court (the potential for the drug to cross the blood-brain barrier) and felt that they should offer their expertise on this one single point.

They're not supporting either the parents, or GOSH really. Just chiming in on a point of scientific fact/interest based on the latest findings.

They aren't US Citizens, and given this is already a pre-existing condition I doubt any insurer would touch them.

I was assuming they wouldn't need insurance, if they have 2m+?

If you have the money, you can give birth anywhere in the world you choose, surely? does citizenship prevent you planning to give birth in another country?

Its really annoying me that the American coverage keeps saying the government have decided Charlie should die. The government have fuck all to do with it. Its between the parents and the doctors, money didn't even actually come into it anyway. The judge is not the government and was only asked to decide because the doctors and parents couldn't agree. Its really getting on my nerves.

Sorry I'm confused, why does she need to give birth in USA? Surely here in UK it may be possible to test to see if the baby was a carrier or had the mutation?

It would be horrible to go through all this and then they're landed with a tax bill

I think they will be able to well afford any tax bill they get

IMO the circus that has gathered around poor Charlie is a culmination of years of changing attitudes finally coming to a head.

1. A lack of respect for professionals - when I was a gal in the 1970s/80s, professionals - doctors, teachers etc - were respected and their knowledge was accepted. These days, a lot of people seem to go out of their way to challenge the professional view of things and dismiss it entirely if it doesn't fit their agenda. You don;t need to look very far on AIBU to find posts moaning about teachers, doctors, managers etc and the advice is almost always 'call them out on it'. Teachers must spend hours listening to parents' ridiculous complaints and gripes, which brings me to
2. Professionals can no longer answer back. Everyone must be taken seriously, no matter how ridiculous the claim, and no-one feels able to say: I'm sorry, you are talking rubbish and wasting my time.
3. Your baby, your rules. Coming home from hospital with your six-hour old first baby and your MIL (who has had four children) wants to help you? What does she know? Your baby, your rules. Your health visitor suggests something - what does she know? Your baby, your rules.
4. Echo chambers - you don't have to listen to anyone who doesn't agree with you. Because you are talking to other people with the same opinion, you are convinced you are right, because no one disagrees.
5. Mob rule has replaced common sense and reason - if you say something often enough and loud enough, it must be true.

Sadly, Charlie's parents are suffering from both 1) and 3) and because of 2), have a free voice leading to 4) and 5)

Someone needs to tell them they don't know what they are talking about, and as such, must allow the hospital to do what's best for Charlie. If they refuse to do this, Charlie must be made a Ward of Court.

I was assuming they wouldn't need insurance, if they have 2m+?

2mil really doesn't last very long in an overseas ITU!

but that doesn't matter because he's a political tool so some charges would be waved

I was working under the impression that they sem to hold us medicine in high regard. They've got the money, why would they stay in the uk where hospitals regularly murder babies?

It was just a thought, if they had another baby without genetic testing, if they gave birth in the us the baby could have all the nucleosides and whatever else they wanted to charger them for, without having to repeat this legal battle.

And again, genetic testing in the US, because we're a bit behind with our medicine here and probably don't know how to do it, or would cock it up on purpose to save the nhs money.

I just cannot imagine, with the level of distrust they are showing the nhs, why they'd even stay here.

If you have the money, you can give birth anywhere in the world you choose, surely?

1. Good luck being heavily pregnant and making it through border control. Even if you have millions in the bank. Children born in the states have automatic US citizenship and knowing that, agents are always on the lookout for immigrants attempting to give birth on US soil.

1. Hospitals/doctors in the USA actually don't like it when you don't have insurance. Even if you pay privately. Of course you can be seen in an emergency situation. But they want you signed up to insurance/government health care

1. Even with 2 million, if you have any complications, the cost of medical care in the USA is so high that you would burn through that faSt. A bog standard hospital birth "costs" tens of thousands of dollars. Specialist child medical care is astronomical.

I haven't seen anything of either family other than Laura Gard who just seems to be peddling tat from the merchandise shop. In ridiculously poor taste but the barmy army seem to be lapping it up.

I would be very shocked if the court hearing changed anything and given the circus the parents whipped up the last time GOSH gave them extra time with Charlie, I expect that Charlie will have been allowed to pass away by the end of the week. I do sincerely hope that the parents are supported in the appropriate way afterwards because they so far have not been and they will require a lot of counselling. If they hadn't surrounded themselves with such moronic agenda driven halfwits thus far, I suspect they would've been counselled to some degree already and be more prepared for the inevitable.

If, and it's a big IF the judge decides to stop life support, of course that will be devastating for the parents. But they know this is a possibility.

If that happens, there may well be a lot of internet warrior stuff initially and wailing and gnashing of teeth.

That will stop when the money stops. Sorry for being so blunt, but most of the mob are being urged on by those who will benefit. The mob won't benefit in any way whatsoever. Think about it.

So IF the decision is made to withdraw life support, it will be a short reaction.

Then they will move on to the next thing.

I don't mean to trivialise CG's life, suffering or the dilemma/trauma of his parents. But it doesn't seem to be about them or him anymore.

Thursday hopefully will give us the decision.

If it is to give him treatment or to withdraw life support, either is fine imo. It will have been based on FACT and EVIDENCE and GOSH and staff can hold their heads up high no matter what.

I am thinking life support will be withdrawn. But speculation is not good either is it.

This must be awful for their wider families given that this is a genetic condition. It's appalling bad luck that they both had the same genetic mutation.

I wonder how the parents are feeling and the other siblings. Have they got it? Can they pass it on?

It has perhaps raised some very uncomfortable feelings all round.

On the subject of future children then IVF with PGD could be used theoretically so it could effectively be eradicated from the next generation.

It's reminded me of a mum I met. She could conceive very easily but had had numerous chemical pregnancies and miscarriages. She found out she had an inherited chromosome problem. She said that when she looked back on her family tree she could see lots of only children in various families and that suddenly it all made sense.

Good god, I hade no idea they were peddling Charlie tat. I'm speechless!

Someone needs to tell them they don't know what they are talking about, and as such, must allow the hospital to do what's best for
Charlie

While I agree with this totally in theory, in practice ongoing severe stress, terror and exhaustion can reduce people to a state beyond reason imo. And that's without the intervention by pastors, presidents, popes etc that surround the Gards. When my DM was dying and in the most desperate state, I can honestly say during the last 3 months I was irrational to the point of being unhinged. The things I'd seen my DM go through had literally done my head in :(

And that was with my DM not my tiny baby. I cannot imagine the state the Gard's are in. And while I can't condone their behaviour, I can understand them doing and saying things that are clearly not true.

I hope the right decision is made for Charlie very quickly and that someone somewhere will support his parents who I think are being driven to the point of insanity by all they have been and are going through.

@Lightlovelife

Yes - it's all highly speculative. That's not to say it should not have been investigated and considered - and it was. The result being that even if successful it could only maintain Charlie's current state of Heath and not improve it.

Quote from GOSH "Nucleoside therapy has been referred to as “pioneering treatment”. In fact, this type of treatment has not even reached the experimental stage on mice let alone been tried on humans with this particular strain of MDDS. "

And:

"Charlie’s parents have applied to take him to the United States for nucleoside therapy treatment. The doctor in the United States has not had the opportunity of examining Charlie but, based on the medical information available to him, has acknowledged that he thinks Charlie “is in the terminal stage of his illness”.

Placemarking

I reckon they'll keep the money, and use it to finance the birth and possible care of any further children in the usa.

DH thinks they'll use some of it to get married, because "It's what Charlie would have wanted".
I said not to be so fucking crass, he said he's not the one putting selling air fresheners with his sick child's face on with the caption "Smell the Success" above his bank details.

I hope by the end of the week he is allowed to pass away. I'm not even sure with how much dignity he can at this stage though