Looking for someone who has a newborn with Bleph

[Guest guest]

My name is Amy and my daughter was born with Bleph....It it a new

mutation and I was just wondering the outcome of kids that are born

with the disease and what they have had to go thru. The doctors here

is Pittsburgh, PA don't really have much info...They told me that

is the worst case they have seen. To me she looks normal. I've

seen some of the pics on the website and they look worse. I'm just

wondering if was miss diagnosed. They said she had to wear

glasses, but even when I don't put them on her, she looks araound just

fine. No squinting or nothing...I'm going crazy on what I should do.

They genetics doctor said she didn't need to be seen for anaother 3

years....can anyone out there tell me anything about this...