Kubuś is our little miracle. He’s a cheerful, smiling, and loving boy who fills our lives with joy every single day. After the heartbreaking loss of our daughter in 2022 and another miscarriage in 2023, Kubuś came into the world in the fall of 2024, a long-awaited treasure. Though he was born nearly a month prematurely, he was healthy and strong—our ray of hope after the most difficult experiences.
In the early days, we noticed a slight asymmetry in his body. But after seeing a physiotherapist and having his hips examined, we were reassured that everything was normal. His development was a bit slower, but still within the expected range, and we felt at ease, thinking that everything would be fine.
But in July, everything changed.
One day, Kubuś started having strange seizures—his body would freeze, and his lips would turn blue. Terrified, we rushed to the hospital, not knowing what was happening. The moment we walked through the door, the memories of our past loss came rushing back. The same hospital sounds, the same corridors, the same fear for the life of our child. Everything we had experienced with our daughter Majka in 2022—when we lost her at just 8 months old after a long and painful struggle—returned with a force that overwhelmed us.
At the hospital, we learned that Kubuś was having epileptic seizures, specifically partial seizures with impaired consciousness. During these episodes, he would freeze, lose contact with his surroundings, and his oxygen levels would drop. The diagnosis: focal epilepsy. The first medication caused an allergic reaction, and in the following weeks, he had as many as 10 seizures a day. Eventually, we found the right medication that successfully stopped the seizures, which was a huge relief. These episodes were exhausting for Kubuś and put tremendous strain on his little body and brain. Repeated seizures can even lead to regression in the development of skills that had been previously acquired.
Then, two and a half months later, the results from genetic testing came back. The diagnosis was another devastating blow: a mutation in the STXBP1 gene.
This gene plays a critical role in the proper functioning of the brain. Because Kubuś’s body produces too little STXBP1 protein, the connections between his brain cells don’t work properly. This rare and severe neurological disorder causes developmental delays, difficulty learning new skills, muscle tone disorders, and, of course, epilepsy—often resistant to medication.
After losing Majka and facing another miscarriage, we were thrust into a battle once again. But despite the overwhelming pain, we refuse to give up. Kubuś is an amazing, joyful boy. He loves people, always has a smile on his face, and is curious about the world around him. His determination to learn gives us hope, but he needs intensive therapy to help him develop as best as he can.
There is hope, though, and it fuels our strength. Clinical trials in the United States are already underway for gene therapy targeting STXBP1—a therapy that could transform the lives of children like Kubuś. Early results from preclinical studies show incredible promise: the therapy has the potential to restore normal nerve cell function, improve brain activity, and even reverse the symptoms of the disease.
This is no longer just a distant dream; it’s a real opportunity for Kubuś to live a life without limits. However, gene therapy is not a simple solution—it comes with a significant financial challenge, costing millions of dollars. These are sums that no family can bear alone, but with the help of kind-hearted people, we believe that together we can make it possible. Every gesture, every contribution, brings Kubuś closer to the life he deserves.
Until this therapy becomes available, Kubuś needs the best possible care. He requires rehabilitation, physical therapy, and other treatments to support his development. However, all of this comes at a considerable cost. That’s why we’re reaching out for help.
Every donation, no matter how small, is a step forward in giving Kubuś a chance at a brighter future. With your support, we believe that Kubuś can grow, play, and develop just like his peers. Together, we can make this happen.
Please join us in supporting Kubuś’s journey to a better life, filled with health, hope, and happiness. Your kindness will make all the difference.
From the bottom of our hearts, thank you.
All funds raised will be managed by Give.Asia and paid directly to the hospital.