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A Crouzon syndrome story

hola, mi nombre es Natalia , soy de argentina.. y mama de tres niños, julian victoria y ana paula. mi niña mas pequeña tiene crouzon....

Hi, my name is Adriana. I'm from Ecuador. My nephewe have Crouzon syndrom. He have 4 years old. He is very healty but his eyes are very big. Last week genetic analysis were received and confirmed the syndrom. Yesterday she visit the ofthalmologist and he said that because his eyes were very big, the retina streched a lot, so with the time he will be blind. I have seen on internet a lot of cases and everyone have big eyes, but not blind. There is a specialist I could visit? Do you know information? I want a second opinion. The boy have 4 years old! He can't see a LOT but he recognize everyone and see many things, but BLIND? There are chances of a surgery? I need help please, even if we have to travel somewhere.

Posted 6 years ago by Adriana

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