Emmanuel with Pfieffer Syndrome is “a Happy Child”

Emmanuel, in his short four years on earth, does not understand that he is different from others.

With the complications of Pfeiffer Syndrome hasn’t enjoyed his childhood like any of you, since he has spent most of its lifetime in hospitals, surgeries and therapies .

At his very young age he has undergone 18 surgeries. Including six surgeries to reshape his head and skull. Because of all of this trauma he is very nervous child and timid.

He draws a lot of attention wherever we go because of his facial differences from other children, tought all human beings are different from each other. He is a lot more striking than everyone else.

Despite of all his physical differences, psychomotor delayed behavior and slower than normal learning compared to children of his age, he is very smart and learns fast whatever he is taught. He loves to play with digital computers and smart phones having a great ability to handle them like many other children of his age will do now days.

As his mother, I hope for acceptance and support for Emmanuel. He is charismatic and eager to learn and I want to give him the opportunity of having as close of a life to normal as is possible. So that he can achieve his full potential and becomes a useful member of society one day, just like many other people born with the same syndrome.

March is the Month to Share YOUR Story!

Do you or your child have a rare disease? We want to hear your story. This month we celebrate all patients and their families who speak out on behalf of their condition to raise awareness, connect with others and inspire the community. Make sure to share your story with us by writing to us here.