Skin too fragile to touch
stanmed.stanford.edu
stanmed.stanford.edu
You can read his blog here: http://mihai.sucan.ro/mihai/blog
His twin brother is still fighting.
I am very glad to see that a great medical research center such as Stanford is doing work to heal this disease. If you want to make a donation this year, please consider them. Mihai also wrote about donating in his last blog post.
So your reasoning for treasuring his life over other possibilities doesn't hold.
Sick Kid's developed an iPhone app - which is actually quite informative to go through on your own - to help create more structured outcomes: http://www.sickkids.ca/Research/iscorEB/index.html
If you'd like to tear up a bit, here's an article about The Butterfly Girl - one of the stars at Sick Kids whose strong attitude and will I can only marvel in amazement at: http://www.thestar.com/news/canada/2014/07/01/butterfly_pati...
> "“One child came in costume as a mummy, covered in bandages. During the evening, some of the blood from his wounds began to seep through the gauze, and those who didn’t know this child had EB were remarking about how realistic the bloodstains were. It’s impossible for me to imagine what it’s like to be the parent of that child.”
:(
But perhaps part of the reason for existing is to be a constant reminder for researchers to get on that gene therapy research...
What does matter is reliable, flexible decision-making capabilities, and killing someone is just about the worst way to achieve that (barring that the person you kill isn't doing more damage than good in this regard.) Suffering is bad because it causes people to make bad decisions.
And that isn't something you can easily argue is true for the situation I was responding to.
I don't think it's tenable to say that suffering is bad only "because it causes people to make bad decisions", unless you are comfortable saying that inflicting pain on infants is morally neutral. (I don't think a very small baby can rightly be said to be "making decisions", good or bad.)
>unless you are comfortable saying that inflicting pain on infants is morally neutral.
Why not make your argument about chickens or pigs? I don't care if a chicken suffers before I eat it: it's dead. It was bred to die. That's not much of a moral quandary for me, to be honest.
Baby humans have a lot of potential, and we need them to make good decisions as adults. That doesn't happen when you don't care about children's pain. But it definitely also doesn't happen if you kill them.
And when it does, it clearly is good. That's why we evolved pain receptors: because it enables better decision-making capabilities. People who can't feel pain suffer plenty for it, and they live in real danger.
Chickens do not have that potential to be valuable decision-makers. That is the only reason it is acceptable to breed them for death.
Especially when you've got a world of absurd religious philosophies to compare it to.
I dunno, do chickens agree with you on that?
- an antagonist in Final Fantasy X
Meaning is not a side-effect of suffering. It's a side effect of correlations between subsets of reality, like those necessary to drive perception and rationality.
"If there is suffering, and none of it matters, then nothing means anything" does not seem to imply "if there is no suffering, nothing matters".
Their claim does not seem to imply that all meaning eventually derives from suffering. Only that either some suffering matters, or nothing matters.
It also doesn't seem to imply that if there was no suffering that the statement would still apply?
I think?
This statement means that the 'mattering' (meaning) of anything else is contingent upon the existence of meaningful suffering. So if there were no suffering, nothing else could matter.
If there exist some X, and it was true that either some X Y, or nothing Y, that would not imply that if it were the case that there are no X, that nothing Y.
If it is true that (H & J) -> K, and it is true that H, then it is true that J -> K.
Let H be "there is some suffering", let J be "something means something/matters", and K be "some suffering matters/ means something".
J -> K is equivalent to K or not J.
If one believes that "if there is some suffering, and there is something that matters, then some suffering matters", and one also believes that there is some suffering, one could then conclude that "either some suffering means something, or nothing does". This does not mean that one could conclude that "if there WERE no suffering, nothing would mean anything". Rather, one would only conclude that "if there IS no suffering, nothing means anything", but that is only because one already believes that there is some suffering. One could, under the beliefs above, reach the conclusion that "if there is no suffering, <insert anything here>" by the principle of explosion.
But like I said, it is the exchange of information that gives things meaning (that's what minds do,) and the only way to actually make nothing matter is to destroy all information-processing systems.
Adults and even children can make choices about their treatment or if they prefer to die (do you think the children in this article should have been given this choice incidentally?) But for babies we should be willing to make that choice for them in extreme circumstances.