Eliška and Luděk Dostál
We are a big family with three children. The oldest, Theodor, is 7 years old, the middle child, Stellinka, is 5 years old, and the youngest, Luděk, is 2 years old.
Stellinka suffers from a very rare disorder called mosaic Trisomy 9. This disorder is incredibly rare, with only a few other people in the world facing it. No one can tell us how our daughter’s condition will develop. The chromosome disorder is mainly manifested in Stellinka’s delayed psychomotor development, a non-standardly shaped epiglottis and overall slow development (vision, movement).
When we found out that Stellinka had a serious genetic disorder with an uncertain future, it was a huge shock. Suddenly we felt lost. We couldn’t absorb the incoming information about her health. It wasn’t until we received help from a hospital psychologist that we were able to get back on our feet. He listened to us, offered us various options, and together with a social worker, gave us contact information for the Společnost pro ranou péči in Olomouc. That was in 2018.
Thanks to the quick response of Pavla Matyášová (the director) and she contacted with the organizations helping parents obtain equipment, we were able to obtain basic necessities (oxygen concentrator, breath sensor, sensors, and others) so that we could have Stellinka at home. They were the first people who did not force us into anything, listened to us, and were simply there for us. After 5 years, I can say, for the whole family, that whenever we need help, they are there for us. And not just when we need something. They are also there in moments when they share the joy of progress and success with us and just want to make us happy. Stellinka’s health is still like on a rollercoaster. One moment she’s doing well, and the next we’re on the brink of life and death. You get used to many things over five years, and you think nothing can shake you. That is not true. We still face a difficult situation. However, we are stronger every time. We cannot imagine getting through this without the support of the Společnost pro ranou péči.