"These are some of the faces of the children we are raising awareness for this June. These are the faces that the doctors give no hope. Hydranencephaly is so rare some doctors will never see a patient in their entire careers. We need to change this, we need to make doctors see that Hydranencephaly in their text books is not the faces we love. Yes our children have many medical concerns. Yes our children may not live as long as the average child. But some do. Hope is all a parent needs. We want the medical community to tell us the actual facts. The facts not in their text but the ones known by the community of parents that have devoted their lives and hearts to their children. They are truly the only ones that know these facts. They are the ones in these children's daily lives. Our children do smile & laugh. They play & learn. They have friends, family and they know who they are. Please share with everyone you know Hydranencephaly Awareness this month. Help the medical field and worldwide community know about this very rare condition that my son Jeremy was born with. Knowledge is power for our children and their families"
And of course, meet Jeremy - one of the faces of hydranencephaly: