A non-surgical tumor! Neurofibromatosis! Please help me in this difficult battle!

My Illness

In 2012, I was diagnosed with type 1 neurofibromatosis. Even though I was still a child, my whole world came to a halt in an instant. Since then, I’ve had to face many challenges that have tested my strength, patience, and determination.

Because of my illness, I live with the knowledge that new tumors could appear in my body at any moment.

Numerous challenges

One of the biggest challenges turned out to be a tumor in my spinal cord. It caused weakness in both of my lower limbs and robbed me of the mobility I once took for granted.

In 2020, my illness began to progress much more rapidly. The tumors were growing at an ever-increasing rate, and my daily life became filled with a series of tests, consultations, and hospital stays.

Consultation

A few months ago, I received another piece of difficult news. The tumor, located at the optic chiasm, is in a spot that cannot be operated on without the risk of total vision loss.

After the consultation, the doctors were in agreement. In my case, chemotherapy and radiation therapy are not options. Over time, it also became clear that full proton therapy is not possible. The only chance for partial proton therapy will arise after treatment with MEK inhibitors.

Further treatment

I am currently in talks with the MSWiA Hospital in Warsaw, specifically the Department of Rheumatology and Rare Diseases. I will begin diagnostic testing there on August 4, which I hope will provide the answers I need.

At the same time, I am consulting with the Institute of Pediatric Oncology in Kraków regarding the possibility of treatment under the Emergency Access to Drug Technologies (RDTL) program. All the specialists emphasize one thing: time is of the essence, because the risk of vision loss is very real and could occur at any moment.

Family and Dreams

Today I live with my parents, who are much more than just family to me—they are my safe haven. Every day, they give me courage when fear sets in and remind me that I’m not alone. Although my sister lives on her own, I feel her support and presence regardless of the distance between us. Thanks to them, it’s easier to believe that even the hardest days can be survived.

I’ve always been curious about the world and have found joy in learning. My illness has changed a lot, but it hasn’t taken away my dreams or my desire to learn. That’s why today, despite all the challenges, I’m a student and am pursuing my studies through an individualized study plan. Each new semester is proof to me that it’s worth fighting for what really matters.

I need help

Although my family and I are doing everything we can, the medical costs are a very heavy burden, and we are unable to bear them on our own. That is why I am asking for your support. Every contribution is not only a chance for me to continue treatment, but also a source of great hope that we will not have to face this challenge alone.