VZP přislíbila hradit genovou léčbu Zolgensma všem dětem s SMA indikovaným k léčbě! Aneb snad nejlepší zpráva tohoto roku!
O Jiříkovi a jeho boji se spinální muskulární atrofií
We never thought and probably didn't even want to admit that something like this could happen to us as a family, and especially to Jiřík - one cannot even imagine such things. When we started our family, we relied on the fact that we were healthy, and that there was no reason why our children would not be healthy too. But sometimes things don’t go according to plan, and now we have no choice but to fight for Jiřík to have a healthy and happy life despite this serious diagnosis. We know that he is a very special and smart little boy who can do a lot in this world despite this challenging obstacle.
That is why, Jiřík, we will do everything to ensure that you are as self-sufficient as possible in life and that you never stop laughing! ❤️
By sharing our story or providing financial help, you will also contribute to Jiřík being able to fully fight the disease and mitigate its consequences, and so that he can continue to laugh despite the adversity him and his family are facing.