The first months were like for any healthy baby. She still had an appetite, slept enough and was always smiling and happy. She started to get stronger and you could tell it in her arms and she started enjoying her hobbies beautifully. She was more interested in toys that she reached for with her hands.

It is true that already in the early period she suffered more often from stomach pains, which, as we later found out, was related to a low ability to turn on her side and belly.

Already from the 6th month, she seemed to us to be less active and not acquiring new motor skills. The movement of her legs was always more passive, but because we at regular check-ups, the doctor said that everything is fine, but she is just a little lazy and will catch up eventually.

Her efforts to turn onto her side were becoming more and more difficult. She was more weepy in the tummy position and raised her head only with difficulty. Of course, I informed the doctor that it seems to us that Eliška is not quite well. But she insisted that she was late or lazy and needed more motivation to move. So Eliška and we started exercising more intensively, on a balloon, mat and went swimming.

When Eliška did not show any improvement even after intensifying the exercises and after follow-up checks, we were sent to (on our demand) to a physiotherapist and subsequently to a neurologist for suspected neurological disease. We were admitted for examination very soon, where they informed us that SMA was suspected. The doctor was very accommodating and did all the necessary steps to get all the necessary results were as soon as possible, as he knows that time plays an important role in this disease. When Eliška was diagnosed with SMA (type 1-2), the darkest moments in our lives began. We didn't know about this disease at all, what it entails, what the treatment options are and what the prognosis is. After getting the information, it was perhaps even worse. Fortunately, this was already at a time when there was a 3 kind of treatment. We were sent to a consultation for the initiation of treatment, where we were also informed about the pitfalls associated with it.

It was in mid-November 2021 when Eliška was supposed to start genetic treatment with Zolgensma. By that time, Eliška was already very weak, she was just lying down and already starting to have problems with breathing, and we knew that time was running out. Unfortunately, everything became very complicated, because the mother could not take it all mentally and the treatment could not take place. So my dad started doing everything to fix it as soon as possible. Everything turned out in such a way that I received my 1st treatment in a different form, with another of the possible methods of treatment, spinrase injection into the spinal canal. We were very happy when we managed to do it before Christmas on December 20, 2021, so that the disease would at least slow down and we could have a quieter Christmas. Finally, I started my genetic treatment on 3/31/2022 after completing all spinrase doses.

After calming down the situation by starting treatment and running into constant exercise and finding out possible procedures and methods to improve the condition, an avalanche of regrets began to fall on us. They were constantly returning events, memories and clues that we might not have seen, they explained why we didn't do this and that, so that We would have found out about this disease earlier. Thus, by stopping the progression of the disease in time, we would perhaps save many functional motoneurons. A single visit to an experienced neurologist would be enough, and Eliška could be better off.

It is very good that postpartum screening for the detection of this genetic disease is already in place nowadays, because only timely detection of this disease and treatment can bring salvation, a better prognosis for the future, albeit with possible risks.