hello. my brother had his cleft repaired when he was 2 i believe, but he is
now 7 and having to undergo further surgery. just out of curiosity...did
they forcast that for your little boy?

my father is completely blind, most the older generation and some of my
generation in the family are blind in the left eye.

i am lucky, i only have glaucoma and severe myopia with my eyes. although i
do have some retinal thinning, but they are not sure if that is part of the
syndrome in my case. i do also have extremely lax joints with arthritic
changes..... but like i said, i believe i am lucky.

what is occular albinism exactly?

Good luck to you and your son as well

~CarrieM~

On 6/9/06, mikeandcasie@... <mikeandcasie@...> wrote:
>
> hello. I have a little boy who will be four in august. Last year he was
> dx
> with Occular Albinism. We havent seen our eye spec in a few months, so I
> dont
> know where that will take us. Good luck.
> ~Casie mom to skyler prs ss trached 9/02, decanned 5/06, former gtuber,
> cleft repaired, glaucoma, reflux. Occular albinism.
>
> [Non-text portions of this message have been removed]
>
>
>


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