Neurofibromatosis NF1❗Paweł is battling an incurable disease❗

The first days of life

Paweł was born prematurely. He was smaller and more delicate than other children. Strange spots also appeared on his body, which doctors at the time could not definitively explain. It became clear day by day that Paweł would need more support than other children. He also developed muscle tension, so physical therapy became a part of his daily routine. Every exercise was a small step forward and a hope that the effort would pay off.

Time passed, and with it came more questions. When Paweł was 2 years old, the doctors decided to perform an MRI of his head, which only confirmed their fears. Lesions had appeared in his brain. A long journey of consultations and tests began. Finally, the diagnosis was made: neurofibromatosis NF1.

The disease doesn't stop

Paweł’s condition is getting worse day by day. There is no cure, and we can’t say it’s all over. Instead, life keeps throwing new challenges our way—ones we can’t prepare for.
Epilepsy, hypothyroidism, mild intellectual disability, psychomotor developmental delay, joint contractures, and hypertension. The list of health issues is long, and over time, new challenges arise that the illness presents to Paweł and his family.
Paweł has neurofibromas in his brain, which doctors are keeping under constant observation. The boy has also been diagnosed with polycythemia.
Despite these difficulties, Paweł tries to live as normal a life as possible. He attends a special school and explores the world in his own way. His daily life requires more effort than that of many of his peers.

An everyday life unlike any other

Paweł’s life revolves around visits to specialists, ongoing tests, and medications, which have become part of his daily routine. The hospital is a place he knows very well. He cannot be left without care, nor can his 20-year-old brother Dominik, who is also ill and has been certified as having a significant disability.

Both boys require constant care, attention, and vigilance from their parents. That is why Mom and Dad made one of the hardest decisions of their lives. They quit their jobs, which provided a sense of stability, so they could be with their sons every day.
There are also particularly difficult moments. There are days when the boys experience aggressive outbursts. At such times, the home ceases to be a peaceful place, and the parents must, above all, ensure the safety of everyone in the household.

Quiet Courage

When Paweł has some quiet moments in his life, he escapes into the world of history. He is fascinated by past events, heroes, and battles that took place many years ago.
Military history, the fire department, and emergency medical services hold special significance for him. He sees in them people who do not run away in the face of adversity. Perhaps that is precisely why this world is so close to his heart.

Help is needed

Paweł needs rehabilitation—regular and intensive rehabilitation— the kind that gives him a chance to take a step forward. However, the costs are too high. On top of that, there are additional private visits to specialists.On behalf of the entire family, we humbly ask for your support to help provide Paweł with the rehabilitation and care he so desperately needs every day.