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Hannah Rae

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Hello Group

I first posted a message back in December 2003. I just had found

out I was pregnant and my husband has BPES. Jon (my husband) was

unfamiliar with BPES and I wanted to know more about the disorder.

I joined the group and asked around and got some feedback regarding

the chances of our child having BPES. The chances were 50/50.

During my pregnancy I put it towards the back of my mind, because I

knew no matter what I would love our child to no end! Hannah Rae

was born August 3rd. She does have BPES and she is the most

precious girl in the whole wide world. She went to the eye doctor

when she was 6 weeks old, and goes back on the 18th of Nov. The

doctor said there is not much we can do at this point. I am worried

about her eye development?

If anyone can give me advice about what I should have the doctor

look for please help! She loves the light and absolutely loves the

ceiling fan! I have submitted photos under the folder Hannah Rae.

I am so thankful this message board exists! Thanks to all who have

suggestions!

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