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Politics : A US National Health Care System?
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To: Brumar89 who wrote (6686)4/15/2009 11:42:58 AM
From: TimF  Read Replies (1) of 42652
 
I am unfamiliar with Joubert syndrome, so I looked it up. It doesn't seem to normally be a terminal illness. It can be disabling causing mental retardation and severe motor disability. It can also cause other problems sleep apnea as the article you quoted mentioned, poor muscle tone, seizures, and things like extra fingers and toes, cleft lip or palate, tongue abnormalities and retinitis pigmentosa.

So its a rather severe condition, but not normally fatal (except sometimes through the apnea, but lots of people have that), but from what I can tell of this girls situation taking her off the respirator strikes me as unethical. She wasn't brain dead, or doomed to die. The story doesn't tell all the details of her situation, but some people with the syndrome are relatively minimally effected, with some slight motor difficulty and no other severe problems.
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