"new mom" septo optic dysplasia
Posted by kmbuheit on 4/12/2012 at 1:21 PM
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 dysplasiaPosted by magicmom on 11/9/2012 at 3:38 PM
There is also a group which deals with the hormone end of SOD and ONH. It is The MAGIC Foundation (magicfoundation.org). 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 dysplasiaPosted by ScottAFBFamilyConnect on 7/10/2012 at 5:13 PM
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 (www.familyconnect.org) 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) http://www.familyconnect.org/message_board_subject...
You will find that there ARE other parents who you can find and ask your questions.
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