I have a son with semilobar holoprosencephaly. he was born august 9,95. his name is alexander. we found out about his diagnosis 2 wks. before my due date, during an ultrasound. when we saw the dr.'s face we knew something was wrong. well from that moment on our life has changed, we have our ups and downs. Alex is a beautiful boy who is very happy and friendly, he goes to a very good school in boston, where he is loved by evryone. we take care of all of his needs. he's in a wheelchair, he baby talks a lot and is always smiling. he also has a g-tube to help with his weight gain. he has had about 6 surgeries and he may be needing 1 more at the moment. alex has an older sister, bianca she's 11 yrs.old. she loves him very much and she helps out a lot with him. having alex in our lives has been a blessing he has thought me the true meaning of love. I'll be laying if I was to say that life is easy with a special needs child, it's not. when he gets sick we always get worried that something might happen, but his a strong little guy. I don't know of any families in my area that have a child like alex, I would like to talk to a family that is dealing with the same thing. please feel free to contact me.