Remembering Nina

Nina was, from birth, a healthy, active, and gifted child who excelled at everything she touched. She was full of life, empathetic, and always ready to help other children. "She was a born social worker," her mom recalls with a smile. But then the illness came, which changed absolutely everything literally overnight.

Cruel Christmas

The fateful turning point came at Christmas 2023. The family initially attributed the sudden fatigue to the holiday rush, but then on December 27, Nina woke up with a squint. A visit to the eye doctor was replaced by a visit to neurology; stumbling was added to the symptoms. The subsequent CT scan then confirmed the worst fears – a brain tumor.

An MRI merely specified the diagnosis of diffuse pontine glioma. The team of specialists gave the parents a cruel prognosis: approximately nine months to live and the only option being supportive care. But the family refused to accept such a verdict, even after the initial shock wore off. It seemed incomprehensible to them that in the age of modern medicine, they were facing a disease that could not be cured.

Searching for hope despite the prognosis

Nina's father, who is also a doctor, began looking for treatment options abroad. He managed to find an experimental study at the Institute Gustave Roussy in France that offered hope. Unfortunately, similar treatment was not available in the Czech Republic – clinical studies do not open here due to the low number of patients.

The family arranged with the insurance company for the possibility of Nina undergoing radiotherapy in another EU country, and they all moved to France together to be there for her as emotional support. However, the disease progressed very quickly. Within just three weeks of the diagnosis, Nina's condition rapidly deteriorated. She stopped walking, had trouble speaking, and became paralyzed on the right side of her body.

Despite all her bravery and the care of the doctors, Nina passed away on the night of April 5, 2024, surrounded by her loved ones. In her memory, her parents and friends founded an endowment fund, which now continues in her name to support children and families facing a similarly insidious disease.