In 2008, on the portal istotne.pl, we published a dramatic appeal from Antoś Kasperek’s parents for help in raising funds for experimental treatment. The boy was not yet four years old. At 23 months of age, he developed the rare disease metachromatic leukodystrophy (a halt, followed by a regression, in psychomotor development), a disease that was practically incurable in Poland. Antoś was an exceptionally active child. He swam and rode a bicycle. He climbed over every fence. Suddenly, within a month, he stopped speaking.
Antoś’s parents, Kamila and Remigiusz, searched through medical literature and contacted a doctor in France. During an initial consultation, the specialist told them about an experimental treatment trial. Antoś’s parents faced a difficult choice. It was known that the experiment might fail. After 14 years since the report, Kamila Konopnicka talks with Grażyna Hanaf.
What happened to the child, and what was the experimental treatment like? What was treatment like in Poland, and what was it like abroad? What was the struggle of the parents of children sentenced to death against an American corporation like? The interview discusses all this.