My life experience with VCFS

Updated: Mar 19, 2020

My name is JD Mayo. I am 31 years old and I live in Greensboro NC. I was born with a rare genetic disease called VCFS. At birth, I only had two months to live. I couldn’t even breath on my own. I had 3 open-heart surgeries, one each year when I was 4,5 and 6. As I was getting older I would get pain in my feet at night, and my fingers and lips would turn purple. We realized I wasn’t getting enough oxygen. In 2008 I was experiencing more chest pains and passing out. At that time we had a CAT SCAN done. A cardiologist said I had a hole in my heart and a 3 chamber artery’s, he can fix it. In 2009, I was in the hospital for 3 months while they fixed my left lung and made the hole smaller. I don’t really remember much from being in the hospital. The first time I was discharged, I had a seizure and went back in for a couple of weeks or so. Then they gave me oxygen and said use that at night. Since then, I have been sleeping with it at night so I have more energy during the day. I was 26 during that last surgery, which was my 4thprocedure. As a kid it was hard having trouble with math, but everything like science and history I was really good at. But when I got older my mom taught me how to use a checkbook and pay for food etc. That got me ready to be on my own. When I was living with my parents I would pay rent and buy the groceries. Being independent is great. I have been since I was about 21. I moved out got my own apartment, paid my bills, got a job. I even did a documentary for a local VCFS conference about living on my own, showing my apartment etc. I worked at Pizza Hut for 3 years. I moved back to Greensboro. I now have my own condo, which has a mortgage on it. SSI helps me pay my monthly bills. I now have a job as a dishwasher again. It’s what I know! I use the city bus to travel and go to places in Greensboro. I can also walk down to a Wal-Mart to get grocery’s etc. It’s that close to my place. My hobbies and interests include film-making. I love to make short films and submit them to film festivals. I am almost finished with my new film, which has been 4 years in the making. It’s a 16-minute film that I plan on showing again at the VCFS International conference next year in New Orleans. I also participate in civil war reenactments. I’ve been doing that for a while. I love history and the civil war since I was a kid. I also collect sports memorabilia and historical artifacts, since I couldn’t be in the military. In high school I did JROTCH, but after that I joined the Civil Air Patrol. I was an officer with the rank was a Captain. I did that for 5 years and I will never forget that experience. This is my life about living with 22q11 deletion syndrome. How I grew up being independent and hope it can inspire other people like me.

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