#1
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Hello, my name is Amber. I reside in Texas. In 2014 my daughter, Bailey was diagnosed with pachygyria. The diagnosis period was the darkest days of my life. Every doctor I spoke with (there was many) explained to me the severity of my daughters disability. Not only does she have pachygyria but she also has Septo-optic dysplasia. I was told there is no way I could have prevented this from happening to my baby girl. It was also explained to me that there is no cookie cutter prognosis but that I should expect moderate to severe learning delay, probable epilepsy (no seizures yet) and extremely poor vision (due to the Septo-optic dysplasia). Today my daughter is 3. She attends school, is putting sentences together, potty training, beginning to recognize some letters of the alphabet, and counts to 3. She is at about a 2 year level with most skills and, from what I can tell, her sight is decent. I haven't found any cases like my daughters on the Internet. I am reaching out to hopefully find another case somewhat similar to hers because everything I have found in researching my daughters diagnosis doesn't fit what I've seen from her.


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