Oliwka is nearly 4 years old and has already triumphed over death on two occasions.
She came into this world facing severe birth asphyxia, with an Apgar score of just 2. From the outset, we understood her path would be anything but typical. The initial days, weeks, and months of her life were dominated by hospital visits, consultations with specialists, and countless therapy sessions. As new parents, we encountered unimaginable obstacles, yet we clung to the hope that our daughter could conquer them.
The first five months of Oliwka’s life were relatively calm compared to what lay ahead. We followed the routine of regular doctor appointments and therapy, praying for improvement. However, nothing could prepare us for the moment that changed everything.
One weekend in May, Oliwka experienced her first seizure. In an instant, our lives were turned upside down. Her small body convulsed, sapping her vitality. She ceased to smile, stopped moving her eyes, and no longer babbled. Every skill she had developed in her early months seemed to disappear before our eyes. The seizures became unrelenting, occurring dozens of times daily. We rushed to the University Clinical Center in Gdańsk, where a team of specialists did everything possible to halt the seizures, but it wasn’t sufficient. The seizures persisted, bringing with them an avalanche of questions.
After numerous tests, we received the heartbreaking diagnosis: Oliwka has 1p36 deletion syndrome. This rare genetic disorder has no cure. Along with the diagnosis came a list of challenges no parent should ever have to hear: a heart defect, a spinal defect, kidney stones, a neurogenic bladder, epilepsy, vision impairment, and hearing impairment. The news felt like a death sentence for the future we had envisioned for our daughter.
Oliwka is unable to walk, talk, or eat independently. She is nourished through a PEG tube, a constant reminder of her fragility. The deletion also leads to severe intellectual and motor disabilities. We were informed that Oliwka may never speak again, and those words resonated painfully in our hearts as we struggled to come to terms with this reality.
Despite all of this, we refuse to abandon our daughter. Her battle is our battle. Each day, we do everything within our power to provide her with the care and therapy she requires. There may be no cure, but we believe that with the right therapies, medications, and equipment, she can continue to grow stronger.
The financial burden of therapy, rehabilitation sessions, medications, and medical equipment is staggering—approximately 30,000 złoty annually. For the past four years, we have managed to cover most of her treatments and equipment ourselves, striving to give her the best chance at life. However, we have now reached a point where we can no longer do it alone. The financial strain is too much, and we are humbly seeking assistance.
With your support, Oliwka can continue to battle this cruel disease. We will find peace knowing we can provide her with the essential therapies, equipment, and medications for her survival and development. Every donation, no matter how small, will significantly impact her ability to keep fighting for her life and achieving her fullest potential.
We are eternally thankful for the support we have received thus far. Your kindness and generosity have helped us navigate some of the darkest moments of our journey. Oliwka’s strength and determination inspire us daily, and we believe that with your help, she can continue to fight.
Thank you from the depths of our hearts for supporting our little warrior. Together, we can help Oliwka lead a life that, while filled with challenges, will be rich in love, hope, and the potential for progress. Please assist us in giving our daughter the chance she deserves to survive and thrive.
