SPOŁECZNOŚĆ

Welcome to our story!

In December 2019, we joyfully welcomed Mikołaj into the world. Everything was fine until the sixth month of his life, when his development stopped. We went to the pediatrician, but the doctor dismissed our concerns. He temporarily put our vigilance to sleep, but we still sensed that something was wrong. We began searching for answers to the question: What is really happening to our child?

After many tests, visits, and months of fruitless searching, we were recommended to undergo genetic testing. We had no other options, so we did just that, and that's when we learned the diagnosis.

It was September 2022 - Mikoś was not yet 3 years old.

Our son Mikołaj suffers from a rare disease KAND KIF1A

Mikołaj looks like a completely healthy boy in pictures... Despite the smile on his face, unfortunately this is not the case. His disease involves problems with balance, speech, and vision. Mikoś is 6 years old and cannot eat, drink or speak independently. At 14 months old, he sat up on his own for the first time. He currently takes more and more steps, covering small distances on his feet. We do rehabilitation, practice with a speech therapist, attend various classes, go on sessions that support Mikołaj's development. We do what we can to stop this terrible disease. Unfortunately, it's still not enough. He will never catch up with his peers.

For us, he is a little superhero who fights every day for his fitness!