Charlie Gard

a reply to: audubon

God forbid You find yourself in a similar situation.
I'd not wish that on anybody.

a reply to: Cymru

Realistically, it's not too far off the idea behind organ donation. You have to believe that these parents know the odds that this treatment will do much for their son are very, very low, but they are willing to try anyhow. Any experimental therapy is always tried with this in mind - that the doctors doing it will be learning from the attempt as much as anything, even if it does not work.

I've been in a position where I've considered experimental drug trials myself before.

originally posted by: Cymru
a reply to: bastion

I say again, there is a possibility of prolonging His life been offered. This should be the Parent's choice not the elected Government.

There isn't really. There isn't any new evidence, the US doctor said in court it wouldn't work, all that is happening is a mandatory review as It's not the government making the decisions, it's the court and care providers acting in the best interests of the patient.

originally posted by: Cymru
a reply to: audubon

God forbid You find yourself in a similar situation.
I'd not wish that on anybody.

It's a tough one, to be sure. But after all the medics and all the courts had told me there was no hope I hope I would be rational enough to come to terms with it. Obviously it would scar you for life.

a reply to: ketsuko

Wales have default opted in to Organ Donation. I've been tested as a Living Kidney Donor for my Stepdaughter.
Any Research s good Research.

It has been explained to me that the UK laws are very different from US laws when it comes to children. In UK the children have more right than the parents. They made the decision on baby's behalf. It's tragic I understand but the parents need to come to terms with the fact that there is nothing they could do about the baby. I find it strange that they raised $1.7 million and yet they rely on the healthcare.
Some people think they should let them come over here for an experimental procedure for medical research but I think that will only prolong the suffering. If (and that is a big IF) the procedure is a success the baby will spend his life being in vegetative state and the parents will have to deal that and their money they raised will evaporate quickly and the government will end up being billed for it.

a reply to: Cymru

Should be nationwide that scheme.

a reply to: testingtesting

Being discussed in England apparently.

I have to say, I love the way that the eeevil NHS is supposedly keeping this child alive on life support just for the pleasure of killing him (yes, that's what is being claimed), with no motivation at all except to cause the parents misery and grief.

Yet the medics in the US, who freely admit that they cannot cure this child or improve his life at all, stand to collect a pay-off of some £1,000,000 even if CG dies...

... and there's nothing sinister or unpleasant about that motivation, at all. No siree.

a reply to: Cymru

The amount of lives saved per year It is the moral thing to do.

a reply to: testingtesting

Well said.
Rather not be in this situation but needs must.

a reply to: audubon

Evil NHS? Obamacare is all sweetness and light? And I thought I needed my eyes tested. Sheesh.
Don't travel to the UK and get ill any time soon please.

a reply to: Cymru

Reread the post dude.

a reply to: testingtesting
My apologies.
Having had 3 years of treatment for my Stepdaughter I'm a bit defensive.

a reply to: Cymru

You have to go to a third world country before the government doesn't interfere..

I always think that is a funny logical fallacy..

That some how the hospital, pharmaceutical and insurance company board of directors don't count as politicians and buearicrats..

I mean at least the government buearicrats are beholden to the voter..

The board of directors is beholden to who??

Either just the whims of one random owner or the profit margins..

originally posted by: tribal
a reply to: Hazardous1408

with only 16 ppl in the world with this condition and it not being very well understood (pretty sure thats admitted) refusing to allow novel treatments can only be seen as tyrannical and without compassion.

notice the total duplicity and blatant lies : hes brain dead.....BUT hes suffering. Yeah...and how did they arrive at that iron clad indisputable objective scientific fact? They didnt.....theyre engaging in defensive obfuscation and nothing more. Theyre self important pieces of garbage playing god.....that is all.


the fact is....knowing this child has a serious debilitating disease the control freaks kept him on a standard life support protocol for ELEVEN MONTHS!!! Yes thats right, his situation is so dire and irrefutably bad that they thought it was a better use of time and resources to KEEP him on standard, unimaginative, lazy, life support this WHOLE TIME while stonewalling and obstructing the parents desire and ability to pursue treatment options which cannot at this point be indisputably known to have efficacy or not!!!!

like literally this is one of the best examples of governmental, medical scientific tyranny and despotism i have EVER seen in my life.

those who are appealing to the dire nature of his current medical status are appealing to an unknown because there is NO WAY to exactly know whats going on in his brain.


so much time wasted.....so much cold obstructionism......and for WHAT?????

Just in case anyone missed this gorgeous piece of written awesomeness, I thought I'd repost. I agree with you absolutely, and I would like an answer as well. This is deliberate. And reprehensible. I'm not sure that I can adequately express the strange twist of emotions that this causes me to feel. So you came along and said it pretty damned well for me. Thank you.

a reply to: tigertatzen

This was dealt with on the first page. It's a load of emotive cack with zero understanding of medical ethics.

I am fed up of the ignorance around this case, the government are not the ones stopping him, it's a decision reached by the courts and and doctors

I do not get the emotional responses over this case, if the doctors have a minuscule chance of helping and possibly learning something about a rare condition, plus it will not cause the UK any more money to ship the kid to the states.

Then why not, if he is brain dead as they claim he will not feel pain; the body might but the brain is dead the message is not getting delivered.

there is an opportunity for doctors to learn something, let them so maybe they can help the next family.

a reply to: Irishhaf

Then why not, if he is brain dead as they claim he will not feel pain; the body might but the brain is dead the message is not getting delivered.

If he was brain dead then he would be "dead" and none of this would even matter, he has horrendous irreversible brain damage but his brain is not "dead"

I don't know where people are getting this from or if they understand that brain dead means dead as in time to be put in the ground and meet your maker dead