#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.
#2
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Hi Amber,

I see you posted this over a year ago so not sure my response will reach you but am trying anyway.

I sympathise with your post because I had sister who was diagnosed with a severe form of pachygyria, a form of cerebral palsy we were told. This may also include Septo-Optic Dysplasia (I would need to check on the full diagnosis) as she had very low visibility (she could only see very bright lights).

She was completely dependant on us for everything, couldn't walk or talk (she could only say baby mumbles) and relied on her hearing as her visibility was virtually zero. Despite these difficulties she would recognise people around her and had a very infectious personality as she would constantly smile and try and do sit ups when sitting down and this was the only thing she could do on her own without assistance from anybody else. The worst thing was the epileptic seizures she had which seemed to get more frequent and more intense as she got older. She valiantly lived until the age of 10 when doctors advised her difficulties were becoming to overbearing and she was allowed to pass away peacefully.

We were told by doctors that her condition was very rare and that there was only one child in the whole world (who lived in Italy) with a similar condition. I have been doing some research online because tomorrow would have been her 30th birthday and we are setting up a memorial on her behalf.

Your daughter's condition doesn't sound as severe and its great she is still able to function normally despite her difficulties. Not sure if anyone has attempted to get families together or to share knowledge on the condition but would be great to get in touch or form a group to raise more awareness on the condition.

If you would like to reply back to me or if anyone else reading this has more information, my email is zacazad@live.co.uk.

Kind Regards,

Zac Azad


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