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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.