My name is Stefan and I was born in 1979. When I was 9 months old, I was diagnosed with a unilateral retinoblastoma, so my left eye had to be removed. That was “discovered” by my parents – they had seen the white pupil on many pictures. Just as many other people diagnosed with retinoblastoma, I don’t remember a life with both eyes and thus, I don’t actually miss anything.
For the most part, my childhood wasn’t different to anyone else’s childhood – a big sports area and woodland just around the corner made sure I was always found very easily – either on the sports ground, in the woods or playing at the nearby river. Football as well as Skiing, Cycling and Running were and still are my hobbies. Additionally, I really enjoy taking photographs.
Difficult times were brought by puberty – back then it probably would have helped to know other affected people, but 20 years ago that was somewhat harder than it is now. Nowadays, the interconnected world and foundations like the KAKS provide great opportunities to connect with other people. Back then, a narrow, but very close circle of friends, which I am still in contact with, as well as my girlfriend at the time and nowadays wife, were the ones to support and back me up.
I meet little challenges in everyday life – just like any other of the “leading spirits” do too – with simple solutions, as for example bringing the bottle of wine extra close to the glass before pouring it in or taking an extra thorough look over the shoulder when driving.
My diagnose with retinoblastoma got more into my focus over the past five years – when I was more and more concerned with planning a family. By seeking out more information considering potential risks I also learned and experienced a lot that was new to me. This way, many contacts to parents and organizations like the Austrian foundation for childhoodcancer or the KAKS were established. The RB meeting was something that was very new and impressive to me.
There were and still are moments, in which I am aware of having just one eye. But it has never stopped me.
09.09.2015 | Leading Spirits