Hello, My name is Cynthia! I’m 24 years old from Toronto Ontario recently moved to Nova Scotia.
I was born with 22q11.2 Deletion Syndrome and was born with Type 2 Truncus Arteriosus. I’ve had 4 open-heart surgeries and multiple procedures. The first heart surgery was when I was 2 days old. I do have a conduit stent and had my valves replaced, my most recent was August 6th 2019. I had a Michanical valve replacement done.
I was adopted as a child at the age of 4. My adopted parents didn’t know anything about 22q deletion syndrome at the time or did my family, so they had to go to seminars to learn about the Syndrome. It was a very tough time for my parents and my family. I didn’t know how to speak; they ended up taking me to speech therapy and it took me a year to learn how to talk. A year and a bit after they adopted me I needed to have open-heart surgery. I had some complications during my surgery, but I ended up being just fine. My parents didn’t really have a fun time with me as a child the first few years of adopting me I was a very difficult child, I would scream and throw things. I made it very hard for them up until my late teen years.
During my elementary school years it was very difficult for me. I had trouble in school with Math and English. I would sit in class and hate every second of that class. Kids would pick on me during recess because I was different. I was always that kid who would get into trouble for everything I did. Making friend’s and my disabilities in elementary school was very challenging for me.
In my high school year’s I opened up a bit more and made some friends. I ended up being a social butterfly. I ended up falling into depression and dropped out of school at the age of 18. “I regret dropping out”. My depression and anxiety got to the point where I couldn’t leave my house. I saw several doctors and have tried a lot of medication. My depression finally broke at the age of 23 and I am living my life as positive as I can!
I did end up getting a job in my late teens. I started working as a cashier then I got a job as a dishwasher at a restaurant. I know it wasn’t the best job but to me that job was everything. I have always wanted to work in a kitchen since I was a little girl. I did have some issues keeping some jobs, but I ended up working my way from the bottom to the top and after 8 years of working in the hospitality industry. I became a Chef!
Wasn’t the easiest job! I worked long and late hours. I am right now working at a bar, club and hopefully work towards my reseal certificate.
As you know I was adopted, I ended up getting in contact with my biological aunt. Meet her and my uncle at the age 16. Years later my biological cousin found me on Facebook and got in contact with me. I meet her and my Nono. I’ve learned a lot about my biological side. I sadly couldn’t meet my mother, she passed away in 2009. My biological mother at the time was the only one in the family who had 22q11.2 Deletion Syndrome before I came along; she was also diagnosed with schizophrenia and had a similar heart defect as me. I am lucky I had skipped the schizophrenia genetic part. After my diagnosis everyone in my biological family got tested and they were all negative. So my biological mother and I were the only ones in the family who had 22q.11.2 Deletion Syndrome.
I was the only child as a kid, and I was a very draining child for my parents with all my energy. They put me in a group called Girlguide which had helped a lot with my social anxiety as a child and teen years. I would go on trips, camping, I even made some friends who are still my friends to this day as well. It was a very fun thing for me to do as a child. I learned so many things. It was a place where I can be as creative as I can.
I also did horseback riding as a child. I use to compete in horse shows as an equestrian. My parents use to take me to this thing called horse friends, where I would learn how to behave. Horse friends ended up starting a riding program so my parents signed me up. I miss horseback riding ALOT. “As far as I know I did a lot as a child and was always busy up until my teen years”.
I did not go to college but I do want to go to Australia to Le Cordon Bluè for culinary management. I have always dreamed of being a chef. “I remember I use to have a kitchen set as a child and easy bake. I would cook for my parents and make them eat it”.
I have two tattoos and I plan on getting a few more down the road. I have one tattoo that is an infinity sign that’s for my depression. It means “that no matter how hard life gets to never give up”. I also have a second tattoo that is heartbeats for my cardiac. Showing that I am a strong fighter. I enjoy gaming, SciFi and horror. I collect a lot of doctor who stuff. I have seen every episode from 1963 and listened to the old radio shows. I use to style and dye my hair a lot. But I recently shaved my head so it’s growing back healthy! I enjoy playing guitar and I am self-taught. I listen to heavy metal, Old Folk and classic rock music. My favorite bands are, Asking Alexandria, Of Mice and Men, Slipknot, RUSH, Tragically Hip, Mitalica.
My advice to kids and adults who have 22q is ” Live the life you want to live, don’t let anyone control who you want to be.”