Friday, July 28, 2017

Charlie Gard and miracles

A lot of the sad fight about this poor child is about "quality of life" and if he should get his tiny chance to live.(aka QALY, quality of life years.

Those saying: Let the kid die in peace are not evil, but saying: look sometimes miracles don't happen.

But you know, a lot of those saying: Fight till the end are also overlooking a problem. Many think (or pretend to think) that the end point will be a normal boy, and many point to anecdotal stories of such survivals leading to normal children.

But this implies that a child is worthy only if he or she is "normal", or will be completely cured. In other words, their argument suggests they agree with the QALY folks: that they see the end point as a normal child, overlooking that maybe the child involved would never be "normal". Does that mean his life is not worth fighting for?

can we see the value of a life who is not perfect?

One of my cousins had a bedridden child who never grew beyond babyhood. She cared for her for 38 years, with the help of her large family.

Yet in some ways she was "lucky": the child was easy to care for, as are many children with Down's syndrome.

But what about those with behavior problems, including severe types of autism? These children are hard to care for, especially after they hit puberty. The film "Rainman" was a very good example of caring for such a person, but even there, he was high IQ: Most are not.

No, I have no easy answers. There are no easy answers.

there is only love.

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