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Hello my name is Dayna and this is my story.
I am 26, almost 27 years old. I was diagnosed with 22q at a very young age. I had a hole in my heart as well as truncus arteriosus. This is how doctors discovered I had 22q. I have had lots of challenges in my life. My heart condition has resulted in me needing 6 open heart surgeries. The most recent one, I received a pace maker. I also have had a few bouts with endocarditis. Endocarditis is an infection caused by bacteria that enters the bloodstream and can settle within the heart. Because my body is more susceptible to this condition, I am unable to swim in lakes, oceans, public pools or hot tubs. But thankfully I don’t really enjoy swimming in the ocean and I am able to use my grandpa’s pool when I want to go swimming.
I have also had a hard time in school and required a one-on-one aide to learn. But some of my biggest challenges have led me to my biggest accomplishments. I discovered I learn better with hands on activities and with hard work and dedication I graduated high school with a diploma. I also studied business and technology at a trade school for two years. One of my biggest accomplishments is that I drive! And I pay for my own car. I have held some different jobs; however, I have to be careful with which jobs I choose as I do get sick easily. I learned the hard way when I was working at the airport and with kids…both jobs with lots of germs! I’m still trying to find the right career for me!
For fun, I love to hang out with my friends, take trips to Ann Arbor to play at an arcade and drink boba tea! My friends often forget I have 22q, and that’s the way I like it! I just want to be treated like everyone else. I enjoy playing Xbox and talking with Cynthia, a friend I met who also has 22q. It’s nice to have someone who gets what I’ve been through.
I have a few pieces of advice for others in our 22q community: if you have 22q, try not to let it bother you. Try to find an escape that helps you deal with some of the challenges that 22q brings you. I love gaming, but maybe you are interested in certain T.V. shows or hanging out with friends. If you are caring for an individual with 22q, be straight with them and don’t “sugar coat it.” Whatever your journey is, know that having 22q makes you a stronger person!