Tess2202

My grandaughter was born with micro lissen calphy, also known as ' smooth brain' syndrome. Her brain stopped developing at 3 months during gestation.

She is 9 months now. The problem was not apparent until her seizures began at 6 months as her body outgrew her brain's ability to handle body functions.

She continues to deteriorate, does not have adequate swallow reflex and now is fed through a stomach tube. Her seizures are frequent and she is heavily medicated. Her life span projection is approximately 3 years.

This is supposed to be 'very' rare but I have seen posting from other Gulf War parents on the same illness.

I ask other parents and family to document the birth defects they are living with because the Veteran's Authority and government data is lacking.