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Hi there

Welcome to the group. I have a 6 yr old daughter who is also the first in our

family to have BPES. She has had 3 operations on her eyelids, the first was done

when she was 2 yrs old and the last when she was 4 yrs. Her cosmetic result is

fabulous. She has been wearing glasses for 3 yrs now and her vision is still

checked regularly.

The diagnosis of BPES is usually a clinical one and a genetic test is not always

necessary to confirm it.

Enjoy your baby, he is going to be fine.

Regards

Colchester (UK)

>

> Hi,

> I have a 10 month old boy, we're waiting on an appointment with a geneticist

to have his diagnosis confirmed. My son has all the main symptoms of BPES. My

wonderful pediatrician just came back with the diagnosis this week. We have no

family history of BPES. I was wondering if anyone could tell me how common that

is. We've been told that his heart sounds fine. We're just wondering what to

expect from here out.

> I'd love to hear back from someone,

> Thanks.

>

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