I am living with Dystonia Type 11, a genetic condition that causes my muscles to twist and lock, accompanied by constant shaking. At the age of 21, I’m confronting challenges in walking and performing daily activities due to the condition’s progressive nature.
My journey began with a subtle hand tremor at the age of 3, a condition that took
seven years to diagnose. Enduring numerous tests, including MRIs and EEGs, I
faced the frustration of trial medications and the emotional toll of being dismissed by two major children’s hospitals. A breakthrough finally came at Cincinnati Children’s through genetic testing. Despite enduring daily pain, I have to remain resilient.
While I had the first part of the DBS surgery on June 2nd, complications arose, causing delays in scheduling the second surgery. I experienced pulmonary embolisms in both lungs, leading to several days in the ICU and a subsequent diagnosis of antiphospholipid antibody syndrome—a disorder where the immune system mistakenly attacks normal proteins in the blood.
After extensive testing, my second surgery was scheduled for November 17th at Cincinnati Children’s Hospital. I've been recovering from my surgery since and my wonderful friend Natalie got me this super cool brain plush from I Heart Guts!
Thank you for making a plush to help represent me.