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AFBAmerican Foundation®
for the Blind

Expanding possibilities for people with vision loss

"new mom" septo optic dysplasia

i am a new mother. i gave birth to a beautiful baby girl alivia who is 6 months old . alivia was diagnosed with s.o.d opsoclonus . they do not believe that she can see anything and her frontal lobe is meshed. she is a very happy baby and is developing ok. i am looking to connect w parents who have raised or are raising a child similar to alivia. i am aware that the disorder has a vast range varying from severe to mild i wold like to get an idea of wat im in store for. and if anyone knows anything on stem cell research in china ........thak you very much for support

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Re: "new mom" septo optic dysplasia

There is also a group which deals with the hormone end of SOD and ONH. It is The MAGIC Foundation ( They have an annual educational program for parents and kids get to meet other kids etc. They too have a large and active group of parents on face book. Everything is linked from their home page.

Re: "new mom" septo optic dysplasia

I want to let you know about another web site within the AFB family of sites that is specifically for families who have children who are blind. FamilyConnect ( is in partnership with the national parent organization NAPVI. You can use the message board that is designated for Septo Optic Dysplasi or better yet sign up to be a registered user (it is all free) and the social networking component will link you to other registered users of the site with the same eye condition. There is also a message board that you can post your question on specifically for Optic Nerve Hypoplasi (also Septo-Optic Dysplasia)
You will find that there ARE other parents who you can find and ask your questions.

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