My life
Mar 11, 2016
By: Byron Felipe
Error
I was born normal, but eventually was diagnosed, it was hard for my parents but I was very young and was normal for me, time after I had hydrocephalus and johannesburg I operated with the valve Hackim after he tapo I play again operate, after that I was diagnosed a severe scoliosis another problem on my route but I always with the best attitude for more bulliyng to do other children,
eh in my life I had osteogenic distractor on my face and 6 other surgeries to counteract the disease had strabismus and it was tough but thank God I have right now but I went ahead and features could study to the point that soon I'll be engineer.
In colombia I help other child with the crouzon, if you need tips, could you answer me and I have possibility to travel other country for xplain mi case....
1 comment
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.
Commented 7 years ago Adriana 20
