My son, Devin, is 14-years-old.
Devin had his first surgery when he was just 6-months-old and we stayed in the hospital for 46 long days in the Intensive Care Unit and since then he has had 31 more surgeries.
He’s had to have cataracts removed off both eyes and he has had permanent lenses placed on both eyes. Still, he is legally blind in one eye and he has had to undergo so many mandibular jaw distraction surgeries due to his small chin.
These are very painful and it is a very long and involved process. Now that he has become older he usually has to be bribed to get out of the house because people stare and say very unpleasant things.
Devin hasn’t attended school since he was in third grade because he stayed in such a state of continuous illness that it was hard for him to attended classes and make friends. Even his cousins have trouble relating, despite the fact that they are the same age.
To watch this, as a mother, truly rips my heart out because Devin has the biggest heart and the greatest sense of humor for someone who has undergone so much. We have a fundraising drive for him every June to help us out. His dad is disabled so we just make ends meet on a monthly basis that’s why we have the benefit to stay on top of expenses, which are considerable.
We have always wanted to bring awareness to his rare syndrome. Devin was sent to Atlanta when he was just 3 days old and saw a team of doctors: plastic surgeon, geneticsists ,dentists, nutrition teams, vision specialists– he was diagnosed when he was a month old.