Extensive venous malformation❗Thirteen-year-old Ksawery is ready to fight again❗

From the first breath, the struggle began.

Ksawery was born in 2012 , and it was clear from the moment he was born that something was wrong. His torso was blue-purple in color, which was not consistent with that of a healthy newborn. On the day he was born, he was diagnosed with Kasabach-Merritt syndrome, severe thrombocytopenia, and blood clotting disorders. He was immediately transferred from the maternity ward to a hospital in Ostrów Wielkopolski, where a tumor was detected on his liver. That was just the beginning.

On the second day of his life, he was admitted to the Children's Health Center in Warsaw. His condition was critical. Collapsed lung, blood clotting disorders, the newborn's body teetering on the brink of failure. The doctors prepared the family for the worst. They told them to say their goodbyes.

This moment will remain in the family's memory forever.

However, his condition stabilized enough to begin treatment. Intensive oncological therapy was implemented in the first years of his life . Ksawery received vincristine until 2016. At the same time, pharmacological treatment was used to control vascular and clotting disorders. Over the following years, he also took sirolimus and acenocoumarol. Ksawery stayed in the hospital with his mother for two months. Then came years of life divided between home and hospital wards, between hope and fear.

A childhood marked by treatment and fear

They returned to Warsaw regularly for blood transfusions, check-ups, and further medical decisions. Ksawery struggled with thrombocytopenia for a long time, and his body required constant monitoring.

Treatment with sirolimus continued until 2018. Only then was it possible to gradually reduce the therapy. Treatment and monitoring were completely discontinued in 2020. It was a moment the family had been waiting for for years. A moment to breathe. A moment of hope that the worst was behind them.

A few years of silence

After 2020, there were years of relative calm. Imaging tests confirmed that the tumor had disappeared. The thrombocytopenia also subsided. The family could breathe a sigh of relief for a moment. Ksawery grew up, went to school, pursued his passions, and tried to be a normal boy after an unusual start to his childhood.

However, this peace proved to be fragile and short-lived.

The disease returns in a different form

In the summer of 2025 , new symptoms began to appear . White spots on the skin. Knee pain. The family doctor reassured them, explaining that everything was harmless. However, the parents felt the same anxiety that had accompanied them for years.

In October, a purple hemangioma appeared on Ksawery's stomach. The family returned to Cape of Hope. Detailed tests were performed, including an MRI of the spine and abdomen, as well as blood tests. The diagnosis was extensive venous malformation.

What is a venous malformation?

It is a congenital malformation of blood vessels. This means that the veins have not formed properly and create abnormal, overgrown structures that can infiltrate muscles, soft tissues, and organs. This condition does not go away on its own and, over time, can cause pain, swelling, limited movement, and further complications.

In Ksawery's case, the malformation affects the back muscles, subcutaneous tissue, gluteal muscles on the right side, iliopsoas muscle, and abdominal muscle attachments. This is not a localized problem, but an extensive change that affects the functions of the entire body.

Treatment stops the disease, but requires vigilance.

Treatment with Sirolimus has been planned. This treatment is intended to inhibit the development of the malformation and limit its effects. At the moment, Ksawery must take his medication regularly and come to Wrocław once a week for check-ups. This therapy requires consistency, time, and tremendous discipline from the whole family.

The family sticks together

Ksawery is one of seven children. The youngest is three, the oldest fourteen. Their father works abroad to support the family. Their mother takes care of her sick son and the other six children on a daily basis. It is a home where love and support are fundamental, but the illness of one child affects everyone.

Constant commuting, living in tension, uncertainty about upcoming tests, and fear of complications have become part of everyday life. Despite this, the family remains together, trying to maintain normality wherever possible.

What is the battle about today?

The history of his illness, already so long, continues to be written. Ksawery is no longer fighting the tumor, but a defect that has accompanied him since birth and today again demands attention, treatment, and great vigilance.

This fundraiser is a request for support for a thirteen-year-old boy and his family, who have been living in the shadow of illness for years, learning to function despite fear, fatigue, and uncertainty about tomorrow. This aid will not only enable treatment, but also allow them to breathe more easily in their everyday lives, where each new day continues to be a challenge.