A tree
kiwifarms.net
- Joined
- Jul 6, 2021
The thing Is mitochondrial disease can vary a lot. Charlie had an extremely aggressive form. I would 100% be in favour of using the experimental formula on kids with a slower burning form of mito, they can hang on for years, but Charlie's brain was already luna levels of fucked. There was nothing there to treat. It wouldn't be right to waste the treatment on him. The last thing the parents in these situations need is false hope. That would be truly cruel.At the beginning, they considered doing the treatment there in the UK hospital which I believe they should have allowed and let the parents pay for it with all that fundraising money. I read the US doctor eventually said it was futile, but during the time that was being deliberated, could further damage have been delayed if he was allowed to do the treatment sooner?
Either way, I agree his death was inevitable and it sounded very severe and incompatible with life. I guess I'm really just like... let the parents have hope. The doctor offering the experimental treatment said it was a lot more likely to help his muscles than his brain but it was not a zero percent possibility it could improve his brain (though I assume it would be temporary with a degenerative and progressive condition).
I know the "experiment on a living minor" thing would be shot down by any ethics commitee by a mile a minute but that's why I feel like it shouldn't be up to them.
As for @Driedsoap soap comparing this to futile life support for the braindead, I don't think it should be bc rational ppl (not prolife retards) were more concerned about the precedent for the rights of the parents than the dumb crap about how taking him off life support would kill him and was Literally Hitler Evil Socialist Medicine Killing Babies.
I find your opinion fully respectable though.
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