After a sudden deterioration in her health, the first symptom of which was facial nerve palsy, later joined by problems with walking, Johanka was diagnosed on May 24, 2024, with one of the most aggressive forms of cancer – diffuse pontine glioma (DIPG). It is a rare and fatal brain tumor that affects only a few children in the Czech Republic each year. Experimental treatment at the Gustave Roussy clinic in Paris, France, became the only hope. Thanks to a huge effort to do something extra and the help of the Nina Endowment Fund, the almost impossible became a reality, and Johanka started treatment just eleven days after diagnosis, on June 4, 2024.
Like a roller coaster
Thanks to an incredible wave of solidarity in a public fundraiser, the family was able to travel immediately. The following treatment was like a roller coaster. After the first radiotherapy, her condition temporarily worsened in January 2025. In March, doctors therefore proceeded with a second round of radiation and a change of medication. A complication was meningitis, which confined Johanka to bed for three weeks.
Miraculously, however, she got back on her feet and, in the spring of 2025, enjoyed a normal childhood full of running and dancing for a while. In August 2025, unfortunately, an MRI confirmed the progression of the disease. After a long and brave battle, Johanka left us at just 5 years old. 💔
