hi I have heard some much about this group from my mom! My name is
Erin and i am the mommy of the ONE and only madison that you have all
heard so much about from her grandma! I thought i would get on and
post a message. i will try to keep in touch but with madison life is
soo hectic at times. i am sure my mom will keep me informed and ask
any questions that i dont have time to get on and ask. I will try to
help any of you out i can with the information i have consumed since
9/01/04. We are going to start seeing a geneticist that wants to see
madison to do some research on goldenhar. THe way i took what he told
me was he was a teacher also and madison might be in text books w/o
her name just pictures of her as she grows trying to learn more about
the syndrome. THe big question i would like to see answered is why
her chromosomes were all normal, and NOTHING showed up as to why this
happened...SO what actually causes this to happen to babies? If this
guy can learn anything from madison i will it helped.