Bára

My name is Bára, I am 22 years old and I live with Tay–Sachs disease. From a young age I trained in synchronized swimming, which may have helped slow down the onset of symptoms. At 17, I spent a study year in Canada, but due to the pandemic I became less active, and after returning I experienced a significant decline in motor skills. Today I face challenges with running, jumping, climbing stairs, balance, and sometimes even speech. Despite this, I remain active. I regularly go to the gym, swim, and attend physiotherapy, which has helped stabilize my condition.

I am currently studying Japanology at Charles University. In my free time, I enjoy reading, traveling, cooking, and baking. While the disease has limited me, I continue to seek out ways to live fully and actively.