LEVI - 18 years oldRetrun to 22q Stories
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Hi, I am Levi, I am 18 years old, and I have 22Q11 deletion syndrome. I was born with a congenital heart condition called Truncus Arteriosis Type II, and a few days after I was born, I
was transferred to the University of Michigan, C S Mott Children’s Hospital, where I was diagnosed with, at the time, DiGeorge Syndrome. I had my first open heart when I was 12 days old, second when I was 18 months, third when I was 13 years, and forth when I was 16 years. I have had two major blood infections, one of them actually ending up as endocarditis, eating a hole in my aortic valve, causing my most recent surgery. The endocarditis also caused me to develop renal insufficiency, in which 50% of my kidneys have died. I also have celiac disease, which has forced me to be cautious about my diet. So, I see a cardiologist, nephrologists, and a gastroenterologist, and visit with the school social worker on occasion.
So……..Other than that, I am AWESOME!! I do have some learning disabilities, I attend the local high school, where I have an IEP. I have had an IEP since the 6th grade. Prior to that, I had a 504. I go to summer camp in Brainard, MN. The camp is Camp ODAYIN, it’s a camp for heart kids and it is the greatest place I have ever been too. It’s the only place besides home where I feel I can be myself, and there’s actually a saying we have, “you can be happy if you let yourself be”.
I have an older sister who is very supportive of me, and I live at home with both my parents, who are my primary caregivers. In closing, I would just like to add, I am probably the best player in the world at Call of Duty, just saying. Not really, but I am pretty good. Have a great day!!