Hi. I am the father of a twelve year old girl with Holoprosencephaly. For a long while I have been wanting to start a blog/journal to chronicle our lives with her. The goal is to provide a glimpse into our lives, raising a child with significant developmental disabilities. Holoprosencephaly is a rare disorder and there is a lot of misinformation about it so I wanted to provide some real information, from the perspective of a parent who lives with and deals with HPE every day. This is our story.

Periodically I will publish a series of posts describing our history with C, from her birth in 1996 to now. Otherwise I will just comment on what's going in our lives, or anything else that strikes me.