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2255 edison ave My son, Brian, is now sixteen years old, and was diagnosed with semi lobar holoprosencephaly at eight months of age. He is severly disabled, mentally and physicallly, to the extent, that he cannot sit by himself, stand, and walk. He cannot speak, and he has very little vision. He attends school daily, and is very sociable. Brian is our seventh child. He has four sisters and two brothers, who appear to have no problems. Originally, we were told that it was not hereditary. In May of 1995, our granddaughter, Jordan Anastasia, was born with lobar holoprosencephaly. She had severe multiple facial anomalies. She also had hydrocephalus, which required a shunt. She passed on, at the age of five months, in September 1995. On the day of Jordan's funeral, my husband, Anthony, suffered from a brain aneurysm. Even though we were told there was no connection, the fact that both conditons(holoprosencephaly and brain aneurysm) were related to the brain, makes me suspect that my husband may be a carrier of holoprosencephaly, and passed it on through our children. My husband is now permanently disabled.
Of our seven children, only three have had children, and they appear healthy. One genetic doctor informed us, after Jordan was born, that our children had a 50\50 chance of having a child with holoprosencephaly.
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