Neurofibromatosis Type I❗My 13-year-old daughter Maja wants to live❗

The first signs from Maja's body

Maja was 2 years old when I noticed small, light-brown spots on her body. I immediately sensed that something was wrong. I decided to make a doctor’s appointment. I remember that day as if it were yesterday. Maja was sitting on my lap, calmly playing with her favorite teddy bear, when the doctor delivered the diagnosis: Neurofibromatosis Type I.

I don’t remember everything he said after that. I only remember the moment when time stood still. I looked at Maja and thought: why her?

Since then, Maja has been under constant medical supervision. Tests and consultations with various doctors have become part of our daily routine. However , the latest checkup was alarming—once again, our world came to a standstill. The sternum is pressing against the right ventricle of the heart. On top of that, she has sciatica, which may return. Orthopedic examinations only confirmed this.

Fear for the child's life

There are moments when I’m terrified. Unfortunately, I know what loss and unimaginable longing feel like. In December 2025, I said goodbye to my 19-year-old son Bartuś, who had cerebral palsy. He fought his whole life. Earlier, in 2016, my daughter Julia passed away after losing her battle with acute myeloid leukemia. She was 9 years old at the time.

Today, every one of Maja’s test results and every doctor’s visit is marked by intense fear. The memories have come flooding back. I look at her and my heart is filled with so many emotions; this fear is indescribable . I’ll do anything to protect her.

My daughter loves sports

Maja has always loved being active. Sports were her whole world. I couldn’t keep up with her when she ran. She ended up in a track and field class, and she was so proud of it—and I was proud of her. She also joined the Youth Fire Brigade, which brought her a lot of joy.

Now I look at her, sitting in her wheelchair. She’s still the same Majeczka, with a sparkle in her eyes and a twinkle in her smile. But I can see that she’s having a really hard time. The hardest part is that I can’t take that burden off her. I’m always by her side, ready at any moment to hold her hand and support her.

Everyday life can be tough

Today, our lives are different from what I once imagined. I don’t work, and neither does my husband. For years, we were there for Bartek. That was our daily life. Now we’re just trying to make ends meet. Majeczka also has a 15-year-old brother, Kamil, who also has NF1.

Please help me

There’s nothing worse than fearing for your own child’s life. That fear never goes away; it’s with me every moment. I look at Maja and see how much she wants to live a normal life. She tries so hard, despite all the limitations.