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Witam, na imię mam Maciek. Urodziłem się jako wcześniak, po dwóch wylewach do ośrodkowego układu nerwowego. W wieku 7 lat zdiagnozowano u mnie rzadką chorobę genetyczną-miopatia centronuklearna-niedorozwój mięśni. Cierpię na niedomykalność powiek i uszkodzenie rogówek w obu gałkach ocznych, padaczkę. Samodzielnie nie chodzę,poruszam się na wózku inwalidzkim. W codziennym życiu wymagam stałej opieki którą sprawuje…