My four year old son, Tommy, is much like any four year old. He loves cars, trucks, trains and planes and he loves to play outside. Although he is much like any four 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.
Tommy is faced with many challenges associated with his 22q and 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 preschool every weekday for four hours. 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. Although he has so much on his plate, Tommy is one of the happiest and easiest going kids I have ever met.
We have been blessed for two years now to participate in the Free to Be Me event. I cannot begin to express what this event does for not only my super hero, but our family. Free to Be Me allows Tommy to be a regular kid for one day. He’s treated like the rock star he is and he doesn’t have to worry about anything except having a great time. For this one day, he can just be a kid and those memories will last a lifetime.
The pilots, as well as all of the volunteers, give Tommy, his sister and myself something that’s hard to put into words. They give us hope, happiness and so much more. I will forever be grateful for the kindness and generosity of every person involved in the Free to Be Me event.