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Hi ,

we have a little girl Caterina

21 months old in the same condition. Where you had your first op ? May we share

our pictures ?

A bug hug,

Francesco and Olga

-----Messaggio originale-----

Da:

blepharophimosis [mailto:blepharophimosis ] Per conto di lott_tracy

Inviato: mercoledì 7 settembre

2005 19.50

A:

blepharophimosis

Oggetto: blepharophimosis My

Daughter

Hi everyone.I have just found

this group and what a breath of fresh air

it is.

My Daughter is 23months old and has BPES, we

live in Kent in

England and when she was born nobody knew what was

wrong with her and

thought she may be downs,even the opthamologist

shook his head!.My son

is autisic and we have work very close with his

peadiatrian and I

called her direct to ask for help at this point

emily was 6 months old

we were directed to guys hospital in London where

gene testing was down

and found to be BPES,I was told that only 1 in

20,000 children get this

and usually its passed down,to date we cant find

anybody in either side

of the family who may of had it.She has had one

lift and we now just

wait until she is old enough to have further ops

done.

I just wanted to say it great to hear other

families in the same

boat,and I have giggled at the comments knowing

exactly where your

coming from.

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