Photo Essay By Anahita Nicoukar Avalos
A sunny day of March 2003, the word COSTELLO entered my life. This was the day a geneticist said: it’s likely that your son has Costello syndrome. He didn’t say a lot more, I didn’t ask anything and before I went back home he took a few pictures of my son. With a small digital camera and the flash in he took pictures of his face, close ups of his mouth, his nose, his hands, his neck, his feet. These pictures reminded me of the pictures you see in medical reviews to describe horrible diseases. My beautiful little boy whom I was so proud of his smile and black eyes, couldn’t possibly have a terrible disease…I couldn’t help thinking, if he wanted some pictures of him why didn’t he ask me ? I could have given him better ones where everyone could see what a nice baby he was.
Once at home I searched Costello syndrome on the web, I learned that “Costello syndrome is a genetic disorder that affects many parts of the body. This condition is characterized by delayed development and mental retardation, distinctive facial features, loose folds of extra skin (especially on the hands [...] continue the story