MY name is Tanya I gave birth to Jearldean on October 29,1992 she weighed 6lbs 6.2oz they told me she was fine at first but when the doctor went to check her over after birth the noticed a red spot with a little white pocket and the thought it was open spine so the did test her spin was fine but the told me she had semilobar holoprosencephaly.

She is 6 yr old now and it has been a rough but we are doing fine she has a g-tube for feeding cause J.D aspirates cause everything goes into her lungs and to help her with her weight .

She also has Diabetes insipdus and take DDAVP to control her sodium levels and Baclofen for her stiffness .

J.D can not walk ,talk or dress herself she has a wheelchair and attend Levy special education school.

Thing have been going well she is gaining weight and her sodium levels are staying study .

I am really glad that I am not the only one out there dealing with this I am willing to share anything that I can it would be really nice to talk to someone going through the same thing.