hi I have a BEAUTIFUL 4 yr daughter, she also has holoprosencephally, at the time I was16 yrs of age I did not well educate myself about this chromosome diorder. But now I have learned so much on my own!! my daughter gas asthma and a trach, GJ tube (cannot eat by mouth)and has also had a lot of hospitilizations for seizures asthma attacks and dehydration. I know that my baby girl has been through so much, I have seen her suffer so much while in hospital and it hurts me so much to see her like that I just feel like loosing my head sometimes. I know she is a VERY strong baby and for that she makes me strong also I have so much faith in god I dont know what he has planned for my baby and me but Im just hanging on by enjoying every day that we can share together!!!she is so beautiful she has curly hair and really long eye lashes she sits on her wheel chair and gets private home school also she gets OT and PT she also takes about ten different medications a day sll for different reasons over all I think that my baby has bleesed my life because at age 16 I just was having a hard time with my life and she came along and made everything worthwhile!!!! her dad is around but I really dont need any help or anything from him I live with my parents like I said she is the only reasons my life keeps on passing by her big beautiful smile is worth more than anything in the world to me it can make me feel so happy she is the most precious baby. I just wanted to write about my life because I really need to let it out in the best way I can. BLESS MY BABY!!!!!!!!!!!!!!