"I'm not saying that every terminally ill Baby
should be used as a guinea pig but if that is the will of the parents and they get no financial benefit from the use of the drug and there is evidence that it may help I'd consider it immoral not to allow the use of that drug even its its know their may be fatal consequences."
Immoral? Mmm, wouldnt have put it that strongly . Think I might be thinking more along the lines of
a) (Setting aside the unborn here as a separate issue) Our law doesnt even allow parents to correct our children by smacking - yet here we are thinking about granting parents to have permission for a small child to be used like a vivisection animal , in an untried radical experiment when results and side effects are unknown.
b) There was a woman interviewed the other day whose child had similar problems to Charlie and she agreed to experimental treatment. The child died anyway, but that is not what haunts her, she wishes she could turn the clock back and say NO to the treatment because it actually caused the child to suffer more than had been anticipated , and die in pain and distress. She remains anguished and guilt ridden .
c) Its thought that at best ,in Charlie's case, experimenal treatment MIGHT just make Charlie survive and gain a bit more awareness . What if it achieves that ?- the poor little guy has no say , but to be condemned to live a life wholly dependant on others. He would still be blind, deaf, immobile , still have a hugely damaged brain -- but hey - he'd be alive and a bit more aware !!!!
This aspect doesnt seem to have been mentioned by the authorities , and I think its massively important . Keeping Charlie alive might be the parents sole aim now , but I fearif he survives, they may be devasted at the emotional cost later when they see the lack of quality this little figure of humanity will have as he grows up - thanks to their decision. We cant know how a deaf ,speechless, blind, immobile ,massively brain damaged child will feel with his gifted awareness - but is it fair to be able to gamble and decide for someone else with all those severe disabilities, that what he will or wont experience is ok ?
Not exactly sure myself (yet again) what is right here - harking back to our other discussion about extending life until maybe a cure comes along - how can we be sure that in 10 years a new sight and hearing technology and brain cell re-activation operation wont come along which could enrich Charlie's life sufficiently to enable him to have some enjoyment and quality?
Truly an enormous decision in no way straightforward. Feel desperately sorry for the poor parents as well as little Charlie.