My husband and I are so happy to have found a place that other parents understand what we are going though the past soon to be 6 years. Well we to have a daughter named Kyleigh who was diagnosed with semi-lobar Holoprosenephaly at one week of age. It was or worst nightmare,one to find out that something was wroung with your child, and two to have a doctors who couldnt tell you what it was. Finally the doctors researched it and told me that she was going to die. Of course my husband and I lost it, well she made it to see one month so we took her to a specialist in Toronto who knew more about this disorter,and she told us that Kyleigh would be a vegetable and that she would not make it to see her second birthday because children with this condition dont do to well. So we took her home thinking that she was going to die and age 2. Well her second birthday came and went and so did others and in 3 days Kyleigh will be 6 years old.

Kyleigh has had her ups and downs, she takes sezuires and is on Phenobarbital to control them she is also on G-tube feedings because the food was going into her lungs but she never got that till she was 2. Kyleigh besides that goes to school and Loves it she loves people exspecially the people who fuss over her. She loves Barney it is her favorite show. Kyleigh cant walk or cant dress herself we do all that for her, but she can say a few words like MAMA, DADDA, Up.

Kyleigh is very special to us and we wouldnt change her for the world, but we would love to get in contact with other parents that have children with this disorter. So anyone would like to contact us please do.