On August 19, 2024, our lives changed forever with the arrival of our beloved daughter, Marcelka. What should have been one of the happiest days of our lives quickly turned into a time of anxiety and uncertainty. A routine ultrasound intended to check on our newborn’s health revealed unexpected spots on her brain. We were informed that we would need to wait for an MRI to understand what we were facing. However, no one could have prepared us for the diagnosis that awaited us.
Just five days after Marcelka’s birth, she experienced her first seizure. Witnessing our tiny baby convulsing in our arms was one of the most frightening moments we have ever faced. It felt as though our world was crumbling as we desperately sought answers. Marcelka was taken to the Children’s Memorial Health Institute in Warsaw, where a series of tests led to a heartbreaking diagnosis: hemimegalencephaly with polymicrogyria affecting the right hemisphere of her brain.
Hemimegalencephaly is an extremely rare and severe congenital brain defect, and polymicrogyria, characterized by abnormal folding of the brain’s gray matter, exacerbates her condition. This combination leads to drug-resistant epilepsy and presents numerous developmental challenges. The diagnosis was a devastating blow, indicating that our newborn was already facing a significant struggle against her own brain.
In that moment, all our aspirations and dreams for our daughter seemed to crumble. We shifted our focus from typical parenting milestones to dedicating everything we had to help Marcelka survive and thrive. Our immediate goal became finding the right anti-epileptic medication to manage her seizures. For weeks, we watched in despair as our little girl, who should have been discovering the world with curiosity, remained lethargic and barely awake. Those early weeks were filled not with joy but with sleepless nights and constant worry.
As time passed, we finally discovered a medication combination that helped decrease the frequency of her seizures. Gradually, our little warrior began to show signs of life again. Marcelka started to smile, opened her eyes, and her tiny hands began to move. Each small improvement filled us with hope and reminded us of her incredible strength.
However, the path ahead remains uncertain. Despite the progress, Marcelka’s EEG results do not provide much optimism for a complete recovery. The hemimegalencephaly continues to necessitate ongoing intervention. While we are hopeful that the right treatment will help her reach her full potential, neurosurgery may be a necessary consideration if her condition does not improve.
Yet, surgery is not a solution. What Marcelka needs most now is intensive and consistent rehabilitation. Her brain development is severely impacted, and without appropriate therapy, she will struggle to achieve the developmental milestones that many children take for granted. Every day, we fight not only for her survival but for her chance to lead a normal, happy life. Rehabilitation is essential to ensure that Marcelka’s brain can develop properly, allowing her the opportunity to walk, talk, and experience the world as much as possible.
We have come to realize that to give Marcelka the best chance at a healthy and fulfilling life, we must depend on the support of others. The financial burden of her ongoing treatment, medications, and rehabilitation is overwhelming. We are doing everything we can to advocate for her future, but the journey ahead will be long and challenging. We cannot do this alone.
That is why we are reaching out for your help. We are seeking your support to ensure that Marcelka can access the specialized treatment and therapy she requires to overcome this rare and challenging condition. Every day, she needs physical therapy, speech therapy, and other forms of rehabilitation that are vital for her development. These therapies are not available to us without a significant financial investment, and unfortunately, our resources are limited.
We understand that the road to recovery for Marcelka will not be straightforward, but we refuse to give up on her. She is a fighter, and we are dedicated to doing everything in our power to provide her with the life she deserves. Her journey may be long, but with the right support, we believe she can achieve remarkable progress. Your contributions will assist us in covering the costs of her ongoing treatments, therapies, and consultations with specialists.
Asking for help is not easy, but we have learned that every small act of support can make a significant difference for our daughter. Marcelka is a fighter, and she deserves every opportunity to succeed. We are doing everything we can to ensure she has a bright future ahead, but we cannot do it without you.
From the depths of our hearts, we thank you for your kindness, generosity, and support. Your contributions will help us continue to fight for our daughter’s health and happiness. Together, we can help Marcelka live the life she deserves—a life free from the burdens of illness and filled with joy, hope, and possibility. Thank you for standing with us as we advocate for our little warrior.
