The horror of this story, and then some time off so that I could do research into things, finding one more patient, then another, then another, literally finding in each writing a mention of yet another name....
It has really upset me like few other things in my life.
This is perhaps the most *wrong* thing I have encountered in a long, long time.
Besides that I have one son with juvenile diabetes, he was dxed at age 2, and is now 12. He is going to be facing complications in his lifetime. My husband and I have a daughter we adopted from Russia who had very deformed feet at age 6. It turned out she has these two huge holes in her spine. So far, thank God, she has had no progession but what she has often does progress. So she also could someday be among the more disabled in society.
So I am reading this stuff and after the initial horrors, it became worse, because it then was about the future of my children. ( one other child we adopted is very delayed and probably brain-damaged).
Sorry to digress here but you know you bring these kids home from Russia thinking you are giving them a better life, not a death sentence.
For me this issue has been a huge one in so many ways. No wonder I can't sleep. :-)