COLLEENRetrun to 22q Stories
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My name is Colleen Crowley. I am 21 years old and I also have VCFS! (or 22q11.2). I live in the Boston area and yes, I am a HUGE Red Sox Fan! I was diagonosed with DiGeorge Syndrome at birth, then VCFS. VCFS did not exist when I was born! My parents tell me that they didn’t even get a diagnosis on the 22q deletion until I was about 5 years old. I was part of the original group of kids at Children’s Hospital Boston that were studied. I’ve had 2 Open Heart Surgeries (first at 4 days and 2 and 1/2 years old) A fundoplycation at 3 years old Pharyngeal Flap repair at 5 years old (My parents say that was the worst!!!) A g-tube from about 18 months through 4 years old ( I just had the scar repaired this summer!!!) IGG immunizations for 5 years due to getting infections all the time about 5 Cardiac cathaterizations I have ADD, OCD and I’m on a few meds to help that. And on and on…Not all is bad. I graduated High School and got a scholarship to college. I attend Plymouth State Univerty in NH, and majoring in technical theatre. I drive, I work and I now know I can live on my own!! I am not just a Red Sox fan, I am a HUGE baseball fan! I have not stopped talking to my parents about Ryan Dempster. I am hoping you get traded to the Red Sox!!! soon! I read the stories about Riley. It made me want to start getting involved in helping people who also have 22q11.2 because as I was growing up there wasn’t much research and I want to help as many families, as well as my parents, who wished they had the support that you have created. I am proud of what I have been able to accomplish. I want to start sharing that with other kids and their families. It is a very hard disaese to live with. I’ve been bullied and picked on in middle and high school had to transfer to another school but I’m now in college and doing great and want others to know that it will get better. As I alway say living with 22Q is an ability, not a disability.