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In reply to the discussion: We failed her. Big time. Boston Children’s was experimenting on Justina Pelletier, [View all]pnwmom
(108,978 posts)Did you happen to read the Boston Globe reports? The BG is anything but right-wing, and they were the first reports about this case that I read. And they reported on several other similar cases where the hospital has gotten the state to take custody of children with mitochondrial disease.
Soon after the Boston Globe reports came out, one of my young relatives, who had been sick for years, was diagnosed with a condition that is sometimes caused by a mitochondrial disorder. Her doctor decided to treat her as if she has the diagnosis, since the supplements they give for the disease are harmless. And it seems to be helping.
So I had a very personal reason for learning as much as I could about the disorder.
I'm so glad my relative is a young adult -- too old to get caught up in this kind of situation. Her family has been through enough of a nightmare. I can't imagine much worse than having a very sick child -- and then being blamed for the illness.