Štěpánek Rada

My name is Anna Radová, and I am the mother of Štěpánek, a little 5 years old boy from the Czech Republic living with Usher syndrome type 1D (CDH23). For almost three years, we did not even know that Štěpánek was deaf. As a mother, I kept raising concerns, but doctors repeatedly reassured me that he could hear. Precious years of early intervention were lost. Finally, the truth came out: he was profoundly deaf from birth. At age three, he received cochlear implants, and since then we have been fighting to give him the best chance to communicate. Because of his vestibular problems, Štěpánek walked only at 21 months. And in May this year, the most painful news came: the first retinal changes were detected, meaning that his vision will slowly begin to fade. But Štěpánek is not just a diagnosis. He is a boy full of joy, stubbornness, and curiosity. He plays with our dog, Míša, and constantly teases our cat. He loves cars more than anything – he has piles of toy cars at home, and spends hours “repairing” them with his little tools. He already dreams of the day he will be grown up, when he will buy a car and drive it himself. And here is the question that breaks my heart as a mother: how do I one day tell him that he may never get a driving license, because his vision will not allow it? This is why I have joined forces with other families across the world. We cannot just wait and watch. We know there is hope in research, and together we want to push research for USH 1D forward. For our children, time is everything.