I was wondering if anyone out there.......

[jenandron01@yahoo.com]

I have a beautiful 10 year old daughter who was born with mutiple birth defects. She has been diagnosed with Crouzon Syndrome,hydrocephelus,Chiar malformation type 1,syringohydromelia to name just a few. When I have researched on the web I have not found much about pt's with these numerous birth defects being found together. I am wondering if there are other children out there like her and if so how are they coping? My daughter does well mentally but I would like to know how life is gonna be for her. The dr.s' cant really tell me life expectantcy just that she is shunt dependent for life. What is it like to be a teen or adult with these defects? I just want to know so that i can be prepared to help her, SHe is my life,my sunshine and very much a blessing from God. This I know for sure.Thank you.