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December 30th, 2011, 02:16 PM
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Join Date: Feb 2004
Location: Michigan
Posts: 61,770
Have you been to this site?

Focus Families, Septo-optic dysplasia, Optic nerve hypoplasia

They have an email group that I used to be part of. It was very helpful. Brandon has ONH (Not SOD). His vision seems fine now and I only notice his nystagmus once in a while if I'm really looking for it. Nobody else would probably catch it. It used to be very profound when he was an infant and he had significant developmental delays but he's doing quite well now.

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