Incurable rare diagnosis has not stopped Ilona: she walks and is writing a fairy-tale book with her mother

For ten years, Andželina did not know what was wrong with her daughter Ilona. Now, after the latest-generation genetic tests gave an answer, the two are telling their story and creating a fairy-tale book together. Ilona has a rare genetic disease that cannot be cured.

A long-awaited answer

For a long time, doctors could not say precisely what was happening with Ilona. Their forecasts were grim: she might never walk. Clarity finally came from the latest-generation genetic tests, which found a rare mutation. That mutation causes an incurable genetic disease.

From pain to art

Despite the unfavourable prognoses, Ilona walks. Andželina and her daughter are turning the pain and grief that have accompanied these years into creative work. Together they are writing a fairy-tale book.

Mother and daughter hope the book will inspire other people who face similar challenges or long uncertainty about a loved one's health.

The story shows that even a rare, incurable diagnosis does not mean doctors' worst predictions will come true, and that a difficult experience can be given a new, creative purpose.