Guest guest Posted July 19, 2005 Report Share Posted July 19, 2005 Hi, We have a daughter by the name of Antonia and she is 6m old with BPES. We are in Sydney and our doctor only sees one or two patients every year with the syndrome and prior to last week we really didnt know much about this syndrome so I was delighted that my husband found this site, with so much invaluable information. Antonia apparently has a mild case as she is able to open her eyes enough to develop mentally - though still everyone asks me is her father asian - so they dont want to do the first surgery until she is 3 or 4, which will correct the telecanthus and then wait a year and do the surgery to fix the ptosis. I am not sure what sling surgery is though I assume it is the same thing just different terminology. Through the Childrens Hospital in Sydney, we are getting dna tested through a lab in Belgium to find out why this gene mutated, the likelyhood of it happening again and if Antonia is type 1 or II. Anyway, just wanted to introduce ourselves. Simon, and Antonia. Quote Link to comment Share on other sites More sharing options...
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