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Samantha

I would just like to say to anyone who is looking at information about Aicardi Syndrome, that the information on this site is very informative and gives a clear, true overview of the syndrome.

My own daughter was diagnosed with Aicardi Syndrome at about 10 weeks old. She had all of the symptoms listed including severe prolonged seizures, partial absence of the corpus collosum, micropthalmia, brain cysts, recurrent chest infections, learning difficulties and many other complications.

We tried most of the medications mentioned including Gabapentin and a VNS (vagal nerve simulator) but unfortunately she lost the battle at just 6 years old.

The literature mentions that it is caused by a spontaneous mutation (random change) in the X chromosome (gene). To my knowledge the gene number was identified as XP22.

Finally to all the mums and dads who are worthy enough to be caring for one such little lady - try everything that is offered to you from professionals, keep positive - even when it gets tough and make her as happy as you can. That knowledge will be your reward. I am more than happy to help support other parents who have an Aicardi Girl.

Samantha
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