Our nightmare began on May 19th, a day that started like any other. We took our five-year-old son, Olek, for a routine ophthalmology check-up, unaware that his life — and ours — was about to change forever. That visit, meant to be simple and reassuring, quickly became the beginning of a harrowing journey. The ophthalmologist noticed raised discs at the back of Olek’s eyes. At the time, we did not understand the gravity of this observation, but I felt a sinking feeling in my chest. We were immediately referred to the University of Clinical Clinics in Gdańsk for further examination.
The next day, an MRI was performed, and the waiting began. Anxiety gnawed at me with every passing moment. When the results finally came, they confirmed our deepest fears: Olek, a lively, healthy-looking child, had a large tumor on his head. It was a shock so sudden and severe that there was no time to process it. Within hours, arrangements were made for immediate transport to Warsaw, where specialists at the Children’s Memorial Health Institute were ready to perform life-saving surgery. What should have been a routine day had turned into a race against time for Olek’s life.
On May 20th, we arrived in Warsaw, hearts pounding, as we met with the neurosurgical team. The news was overwhelming: the tumor was five centimeters, located near the cerebellum, and causing hydrocephalus, which increased intracranial pressure. The surgery would be complex, fraught with risks, and even after removal, complications were likely. My child’s life hung in the balance, and yet there was no alternative.
The surgery took place on May 21st, lasting six of the longest hours of our lives. When Olek woke up in the intensive care unit, he looked different — changed by the ordeal he had endured. By the next day, we learned that he had developed left-sided paresis, a consequence of cerebellar syndrome caused by the tumor and surgery. His movements were impaired, and his emotions were raw; tantrums and frustration overtook him, leaving both Olek and me feeling helpless.
As if this were not enough, a cerebrospinal fluid leak was discovered shortly thereafter. While a shunt implantation was scheduled as a precaution, Olek’s resilience and strength allowed the doctors to delay it for the moment. Despite these challenges, our son remained determined, showing an indomitable spirit that inspires everyone around him.
We spent sixteen days in the neurosurgery ward, each moment a tense balance between hope and fear. Time was a constant pressure, yet we faced not only the immediate recovery but the looming threat of oncology treatments. Biopsy results confirmed the diagnosis of medulloblastoma, a highly malignant brain tumor, and revealed that the tumor could not be completely removed during surgery. The reality of what lay ahead was daunting: chemotherapy, radiotherapy, and an extended, difficult rehabilitation process.
The road to recovery has been long and grueling. Chemotherapy and radiotherapy challenge Olek’s young body daily, testing his strength, endurance, and patience. Rehabilitation sessions are crucial for him to regain function, learn to move with coordination, and adapt to the deficits caused by the tumor and surgery. Speech, balance, and motor skills require constant attention. Every small milestone — a step forward, a hand movement, a moment of clarity or joy — feels monumental.
Olek’s courage, however, remains unwavering. Even in the face of pain, discomfort, and uncertainty, he faces each day with remarkable determination. His spirit shines through every tantrum, every frustrated cry, and every smile that breaks through the challenges. As a parent, watching him struggle and yet continue to fight has been both heartbreaking and inspiring. His strength fuels our own hope and resilience, reminding us why we endure each long hospital stay, each therapy session, and each sleepless night.
Olek’s story is not just about medical procedures or diagnoses; it is about bravery, resilience, and the unwavering love that surrounds him. It is a story of a child forced to grow up too quickly, yet refusing to surrender to fear. His journey reminds us of the power of family, medical care, and community support. Every therapy, every treatment, and every prayer brings him one step closer to reclaiming a childhood altered by illness but not defeated.
We remain committed to providing Olek with every opportunity for recovery, to ensuring he receives the best care and rehabilitation possible. His path will never be easy, but with continued support, love, and determination, Olek has the chance to grow, thrive, and enjoy the life he deserves. Each day is a victory, and each step forward is a testament to his extraordinary courage.
Nikodem’s Fight: A Heart That Never Gives Up, a Dream for a Normal Life.2701
My name is Nikodem, and from the moment I was born, my life became a battle — one I never asked for, but one I fight every day. There were no signs before my birth. Everything seemed normal, until just minutes after I was born, I began to suffocate. My body turned blue, and I couldn’t breathe on my own. My family watched in horror as doctors rushed to intubate me, putting me on a ventilator just to keep me alive. But that was only the beginning of a long, painful journey that would shape my life.
The doctors soon discovered that I had a serious heart condition — Hypoplastic Left Heart Syndrome. It’s one of the most severe heart defects, where the left ventricle and left valve of the heart are either underdeveloped or completely missing. My heart, instead of working like a normal heart, had to work twice as hard just to pump blood throughout my body. And as if that wasn’t enough, my condition was like a ticking time bomb. Every day, my life hung in the balance. Every heartbeat was a reminder of the constant danger I was in. The doctors said my heart couldn’t function on its own, and that my survival would depend on multiple surgeries.
When I was only six days old, I underwent my first heart surgery. My heart, the size of an adult’s fingernail, was operated on by a team of cardiac surgeons who had a daunting, nearly impossible task ahead of them. They worked with precision, knowing the urgency of the situation, but they had only a few moments to save me. The first surgery was a success, but it didn’t end there. I needed a second surgery immediately afterward, a true fight for life that continued for every breath I took.
At such a young age, I had no way of understanding the severity of what was happening, but the pain was undeniable. The surgeries were just the beginning, and as I await my third surgery, I continue to fight for every single day, for every new moment I can experience. But the road ahead is long, and I still have so much more to face. A heart transplant is impossible at my age, so the only solution is to keep my heart functioning as best as possible, to keep me alive as long as I can.
As if all this weren’t enough, I also lack the left and right ribs that should be protecting my heart and lungs. This means my heart is left vulnerable, exposed to the world without the protection that most children have. My fragile body is at greater risk from even the smallest injury, and every day, I face the danger of something that could harm me.
Months spent in the hospital have left my muscles weak and underdeveloped. At my age, other children are already walking, running, and playing, but for me, those things remain distant dreams. I cannot sit up on my own yet, and I cannot walk. My body is too weak to do what others take for granted. I watch other children running and playing, and I long to join them. I dream of being able to move freely, to feel strong and capable like everyone else. But right now, I’m stuck in a fight that I can’t escape.
On top of all of this, I also have a condition called laryngeal colpitis, which means my larynx doesn’t always function properly when I eat. It’s like a broken valve in a tube, and it makes swallowing dangerous. I often choke on food or drink, and this can be deadly. Eating should be a simple, everyday thing, but for me, it’s a constant struggle. I have to be extremely careful with what I eat, and even then, the risk of choking is always there.
Because of all these challenges, I need intensive rehabilitation. I need physical therapy to regain my strength and develop the skills that every child needs to grow and thrive. I need to learn to sit up, to walk, to run, to eat without fear. These are basic skills, but for me, they are a battle that I have to fight every day. It’s not just a fight for my body, but for my future. I want to live a life where I can play with other children, run, jump, and experience all the simple joys of childhood. I want to have the independence that I deserve, but right now, I need help to get there.
That’s why I’m asking for your support. Only with the help of kind-hearted people like you can I have a chance at a future filled with possibilities. Your support can help me continue my journey to recovery, help me get the therapy and medical care I need to regain strength and learn the skills that will allow me to live a normal life.
Please, help me make my dreams come true. Every donation, no matter how small, can make a huge difference. Even a symbolic 19 PLN can pay for one hour of rehabilitation, one step closer to regaining my strength. With your help, I can keep fighting for my health, for my future, and for the chance to live a life filled with love, play, and independence. Thank you for helping me.
