It’s No Big Deal

Nathaniel [last name withheld]

One of the main characteristics of Apert’s syndrome, the rare syndrome with which Nathaniel was born, is an unusual craniofacial condition. However, at five years old, Nathaniel paid much less attention to that condition than to the condition of his fingers, which were fused at birth. When his mother asked him on my behalf to say a little about himself and to describe what it was like having Apert’s syndrome, this is what Nathaniel told her:

My name is Nathaniel. I’m five years old. I go to Bridge School in Lexington, Massachusetts. I play in the block area. I like to build with bricks and Lincoln logs. I like to build forts with cushions.

I was born with Apert’s syndrome. My fingers, but not my thumbs, were stuck together when I was born. My fingers are not stuck together now. It’s not a big deal and I don’t like it when people make it a big deal. Not very often, bullies say mean things like “you are stupid” and “you are a baby.” But I’m not a baby. I’m five years old. Most of the time, kids just play.

For more information about the disabilities discussed in this story, please visit the Resource Links page.