Karolek’s Journey: A Family’s Fight for Their Son’s Life and Future
The news of our pregnancy filled us with overwhelming joy and anticipation. We imagined all the milestones that every parent dreams of—the first ultrasound, finding out the baby’s gender, preparing the nursery, buying tiny clothes, and finally holding our little one in our arms for the first time. Every detail seemed magical, and we were ready to embrace this new chapter with open hearts.
However, our dreams and plans were shattered by one piece of devastating news: our son, Karolek, would be born seriously ill. From that moment, the excitement of waiting was mixed with an overwhelming fear for his life. We could not know then how profoundly our world would change, nor how much courage we would need to find every single day.
When Karolek was born, the doctors provided a detailed diagnosis that left us both heartbroken and determined to fight. He was diagnosed with hydrocephalus with microcephaly, signs of brain atrophy, underdevelopment of the optic nerves, agenesis of the corpus callosum and septum pellucidum
. The overarching diagnosis was severe cerebral palsy and profound intellectual disability. We could hardly believe that such a tiny, helpless being carried such a heavy burden. Our tears of joy blended with disbelief and a deep sense of injustice.
About six months later, Karolek was also diagnosed with epilepsy, adding yet another challenge to our daily lives. Accepting this reality was incredibly hard, but we quickly realized that our son needed our unwavering love and support more than anything else. We had to adapt to a new reality, one where every day was a battle—not only for Karolek’s survival but for his growth, comfort, and dignity.
Karolek is now approaching seven years old, and while he is surrounded by love, he remains entirely dependent on others for every aspect of life. He cannot hold his head up, cannot sit independently, cannot use his hands, and cannot see. His diet is strict, carefully managed to minimize seizures, and all his meals must be pureed. Every bite, every sip, every movement requires attentive care.
Despite these challenges, Karolek has undergone significant medical procedures to improve his quality of life. He has had selective dorsal rhizotomy surgery, a procedure aimed at reducing spasticity in his muscles, as well as
bilateral hip reconstruction. He receives regular botulinum toxin injections to manage muscle tightness. These interventions are critical for preventing the progression of complications typical in children with cerebral palsy, including painful contractures, scoliosis, and recurrent hip dislocations.
Regular rehabilitation is essential to maintain Karolek’s functionality. Daily physiotherapy, occupational therapy, and therapeutic exercises help slow muscle degeneration, improve posture, and give him the best possible chance for mobility and comfort. Yet, to maximize the benefits of therapy and ensure proper positioning, Karolek requires specialized equipment—a
custom wheelchair with a SPEX system and a therapeutic seating system. Unfortunately, the cost of these medical devices is extremely high, far beyond what we can afford on our own.
Every day is a careful balance of medical care, therapy, and emotional support. We constantly monitor his seizures, adjust his feeding, and work closely with a team of specialists, including neurologists, orthopedic surgeons, and rehabilitation therapists. Each day brings its own victories, from small improvements in posture or muscle control, to moments of emotional connection, like a smile or a glance that seems to say, “I feel safe with you.”
Karolek is our shining light, our source of inspiration, and the most courageous member of our family. Despite his challenges, he radiates joy in the moments when he feels loved, comfortable, and supported. Every milestone he achieves, no matter how small it may seem to others, is a triumph of courage and love.
However, our journey is far from over. The road ahead requires ongoing medical care, intensive rehabilitation, and specialized equipment. We are determined to provide Karolek with the best possible future, but we cannot do it alone. We reach out to the kindness and generosity of others, humbly asking for help to secure the resources necessary for his care. Your support can make a tangible difference—helping Karolek receive the therapy, equipment, and medical attention that he desperately needs to live a life with dignity and comfort.
Through all of this, we have learned that hope is not passive—it is a daily choice. Each day, we choose to hope for progress, for new milestones, for moments of joy, and for a future where Karolek can experience life to the fullest despite the limitations imposed by his condition.
Karolek’s story is one of resilience, love, and unwavering determination. It is a testament to the power of family and the importance of support from those who care. We believe that together, we can help him face the challenges ahead, slow the progression of his condition, and give him a chance to live as fully and comfortably as possible.
Every contribution, every word of encouragement, every act of kindness carries Karolek one step closer to a better life. We thank you from the bottom of our hearts for joining us in this fight, for believing in our son, and for helping us create a future filled with hope, love, and possibility.
Karolina and Marcin, Karolek’s parents
