Tommy is six years old and he is much like any other six year old. He loves cars, trucks, trains and planes and he loves to play outside. Although he is much like any six year old boy, he is also very different. He was born with 22q11.2DS – 22q for short. 22q is a partial deletion of the 22 chromosome and it affects every carrier differently with a wide range of symptoms.
In Tommy’s case, he was affected with a heart defect, a cleft lip & palate, a laryngeal web as well as low muscle tone and developmental delays. He has been tube fed the majority of his life and he’s slowly learning how to eat on his own. Because of his many challenges, he has a very busy schedule. He has been receiving therapies multiple times a week since birth and he has had five surgeries to date. He currently goes to developmental school every weekday. In addition, he receives 3-4 therapies a week at home after school. He is very busy, but he continues to work hard like the super hero he is.