Below is a letter what was sent to us by Sanyika’s mother, Marina, in that she describes their story.

“Sanyika was born on 10/03/2019, a test-tube baby , we waited 5 years for him, he was preceded by countless attempts to conceive. There were problems at the beginning of the pregnancy, but they disappeared by the second trimester, and we’ve thought we could breathe a sigh of relief.

Unfortunately, it didn’t turn out that way, he was born unexpectedly on the 26th week, weighing 990 g, doctors could’t find the cause of the premature birth. After he was born, he had a bilateral, grade 3-4 stroke, we were not assured of anything good, he fought to stay alive for weeks, infections and lung bleeding followed, and soon it became clear that he would also need a shunt to drain the accumulated cerebrospinal fluid.

At the age of one month, he underwent surgery and received a temporary shunt, which stabilized his condition so much that he was taken off the ventilator, and the goal was finally weight gain and development. A month and a half later, the shunt had to be replaced because it was clogged, but after that he managed to learn to eat and we were able to bring him home at three months.

We started developing it almost immediately, we did child physiotherapyat at home using the Katona method, we went to Dévény (town is Slovak) for physiotherapyat as well and we started going to the Tunyogi Pedagogical Service for early development. Sanyika received a permanent shunt in the summer, and in the fall we continued the improvements with full force. At one year old, he could only turn from his stomach to his back, but soon after that he learned to crawl, which was a big milestone for us, he was finally able to change places. It soon became clear that he has epilepsy, fortunately this can be treated well with medication in his case, he has no seizures. We made good progress, he improved a lot in movement, understanding, and attention, until the abdominal stem of the shunt had to be replaced in the summer of 2021 because it was blocked. One month after the operation, he developed a fever, and it turned out that the cerebrospinal fluid became infected during the operation, thereby affecting the entire shunt system, so the shunt had to be removed, and he was put on a ventricular drain for the duration of the cleansing. This usually means a few weeks of hospital stay and bed rest, which in itself is a lot, but we ended up having 3 such rounds: the ordeal lasted from mid-July 2021 to March 10, 2022, during which time he was at home once for 3 and once for 1 week…

During the continuous lying down, his already tight muscles became so tight that he stopped crawling completely, he could only stay on his stomach for a short time, and he could barely hold his head up. The surgeries and pressure changes destroyed the optic nerves, and he became visually impaired.

Of course, the long hospital stay took a toll on him and on us as well, the whole situation seemed very hopeless, he received intravenous antibiotics and many other medications for months… He has had 21 neurosurgery operations in his life so far.

Since March, we have gradually returned to improvements, he can now turn and crawl for a short time (mostly pulls himself forward with his left hand), but he cannot sit, stand, or walk. Intellectually, he has improved a lot in communication (he can’t speak yet, but he has a lot of willingness), but we can see in movement that we can’t move forward because of the tightness, despite the many exercises and therapy. That’s why we decided to consult with Dr. Nazarov, who immediately suggested surgery.

We read a lot of positive experiences about this, and since it is a less stressful procedure, we decided to go for it. After the operation, with relaxed muscles, you will be able to perform the movements you have already learned more easily, you can learn new forms of movement, it can also have a positive effect on chewing (currently we also have problems with eating), and we hope that your feeling of well-being will improve as the unpleasant tension eases. The doctor performs the operation in Barcelona, the price of which is 4,700 euros, which also includes the cost of travel and accommodation. And we have to continue the previous therapies even after the surgery, and it is even important that he gets proper movement development, that’s the only way the intervention makes sense. Most of these are done privately, so if we get any amount of help towards the cost of the surgery, it means a lot to us.”