Guest guest Posted September 7, 2005 Report Share Posted September 7, 2005 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. Quote Link to comment Share on other sites More sharing options...
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