British Family denied right to seek treatment for rare disease

[satimy]

http://abcnews.go.com/Health/wireSto...trump-48438419


I don't know how Britain works, but can't they really deny parents from going to America for treatment? I realize that they might now pay, but from what I have read it sounds like everything's already handled financially. What's up with Britain?

[Lollis]

There is already a thread on this where it has been made perfectly clear that there is no 'treatment' that will help him. All it would do, if anything, is prolong his suffering.

[Medusa Cascade]

The treatment won't help.

[Socialhealer]

we already had a thread on this, and it's not treatment it's more like experimentation the baby is still going to die at the end of it, you're just prolonging the suffering which the courts decided against.

and Trump and the pope stuck their oar in? who cares these two people know fuck all.

[satimy]

we already had a thread on this, and it's not treatment it's more like experimentation the baby is still going to die at the end of it, you're just prolonging the suffering which the courts decided against.

and Trump and the pope stuck their oar in? who cares these two people know fuck all.

So the doctors in America aren't trying to help him? They just want to experiment?

[cuafpr]

so what if its just an experiment, if the family is ok with it, and there is even a .01% chance it works let them do it, its their terminally ill kid. If it fails the data from the experiment could be invaluable to saving the next kid.

[Deleted]

http://abcnews.go.com/Health/wireSto...trump-48438419


I don't know how Britain works, but can't they really deny parents from going to America for treatment? I realize that they might now pay, but from what I have read it sounds like everything's already handled financially. What's up with Britain?

What's up with America for wanting to treat a baby who has severe brain damage and lacks any limb or organ activity? There is no chance. The baby would only suffer needlessly.

I have a suspicion that the US only wants to play the helpful supporting card to have freedom to experiment on a living baby. That is sick.

[satimy]

What's up with America for wanting to treat a baby who has severe brain damage and lacks any limb or organ activity? There is no chance. The baby would only suffer needlessly.

I have a suspicion that the US only wants to play the helpful supporting card to have freedom to experiment on a living baby. That is sick.

If it was my kid, I'd want to be able to make that decision.

[Dyluck]

The US doctor who wants to perform the treatment has pretty much stated that it will have no effect on the kid

[Mittens]

Literally death panels.

[Deleted]

'Charlie is a baby with a very rare genetic condition. The cells of his body can’t use energy appropriately, leading to his organs and muscles being unable to function properly. For the last eight months he has been kept alive by technology on the intensive care unit at Great Ormond Street Hospital requiring round the clock intensive care. There is no known proven cure for his condition but at the moment he is stable and could, in theory, be kept alive for an indefinite period of time.

After months of deliberations and a battery of repeated tests and examinations, the medical team at GOSH are completely convinced Charlie has no chance of recovery. Thus they want to withdraw treatment and switch to palliative care i.e. managing any pain and distress whilst nature takes its course. Their tests done at GOSH have been suggestive of irreversible brain damage. In the opinion of the professionals at GOSH, Charlie will never breathe unaided, or swallow food, and he has little or no awareness of the world around him. He cannot see, hear or feel. He also reportedly has fits that are difficult to control. Charlie's parents refute this and are convinced Charlie responds to their voices and touch, and that he has far more awareness of the world around him than the professionals believe. They do not accept the view of the professionals at GOSH that his condition is irreversible.

Charlie’s family searched all over the world for potential cures and identified a doctor in the USA who suggested that an experimental treatment called nucleoside therapy might offer some chance of stopping further deterioration of his condition; it is unclear as to whether this doctor feels this treatment could actually reverse his symptoms. This treatment has never been used on any human being with Charlie’s condition, although it has been used on children with similar mitochondrial diseases. There are also potentially side effects that could cause more harm than benefit.

Because there is no hard evidence that this treatment might help, and the medical opinion is that Charlie’s brain is damaged beyond any repair, the team at GOSH feel that it is not in the best interests of Charlie to transport him to the USA, that the risks far outweigh any potential benefits and ultimately the treatment would be futile, merely serving to prolong his suffering.'

- So basically the parents are willing to try anything however futile (the kid would likely die in transit) but the doctors think its time switch to end of life care and let nature take its course.

[Mittens]

The US doctor who wants to perform the treatment has pretty much stated that it will have no effect on the kid

And? If the parents want to make a last ditch effort its up to them, not the state.

[Lollis]

So the doctors in America aren't trying to help him? They just want to experiment?

In a nutshell? Basically yes. He's currently at one of the best children's hospitals in the world, with experts who have examined him in and out. They know what they are talking about when they say that nothing will help him.

He cannot hear. He cannot see. He can barely make sounds.
He's trapped in a body that is dying and causing him pain. He cannot communicate and is likely terrified as to what is happening around him.

Keeping him alive in the misguided hope that a couple of doctors, who have likely never examined him, will be able to do anything with a 'treatment' that has already been determined to be futile is just torture.

[Tackhisis]

Why should the state waste a fuckton money on transferring a moribund child whose life has 0 valor to another continent? Those money and resources can be spend on those who can be helped.

[Lollis]

Literally death panels.

It's not a death panel.
It's a, 'this child's whole life is practically torture, we cannot do anything about it and to prolong his suffering is abhorrent' panel.

[Toppy]

And? If the parents want to make a last ditch effort its up to them, not the state.

Its a question of child abuse. A parent does not have the right to abuse their child.

[Flurryfang]

If it was my kid, I'd want to be able to make that decision.

The kid is dying and he is not gonna get better. The american treatment will allow him to live longer, but in constant suffering. The doctors in UK said, that the parents are desperate to keep him alive, even past the point of what is best for the kid.

[Endus]

We already had this thread; http://www.mmo-champion.com/threads/...ally-ill-child

Locking this here.