In may of 1990 I had a little girl born with lobar holoprosencephaly. At that time I was told she would probably not live through the night. I can't believe how wonderful this is to read about other people who have had babies with the same problems as my daughter. She lived for almost three years but during that time it was so difficult to even get infomation on her condition.I wish this infomation was avaialbe to me at that time. I started crying reading this tonight because I would search and search for infomation but I never came across very much. My daughter died in 1993 and now all this support and infomation is here to read and I can barely get through a paragraph because even now seven years later it's still painful