Tonight, 10-year-old Sasha Klimushkin will sit down with his grandmother for a game of chess. Finding a worthy opponent of his age is not an easy task for him, after all, he has been learning this game for three years now.
However, the laurels of grandmasters do not attract the boy much. His dream is to win the game with his illness. Sasha has epidermolysis bullosa. This is a rare genetic disease in which the skin ceases to perform one of its main functions and does not protect a person. It becomes fragile, like the wings of a butterfly - that's why patients with such a diagnosis are called "butterflies". Their skin itself requires special protection: any careless movement can lead to serious injury. At first, small bubbles will appear, which will inevitably turn into painful wounds that are extremely difficult to manage.
And checkmate the opponent in this game will not work - there is no treatment for epidermolysis bullosa. Sasha needs daily dressings - for a cocoon that will protect the boy, special bandages are required that will not injure fragile skin, as well as special creams and ointments.
With them, he can play chess and do other things he likes - for example, take care of animals. In the future, he would like to become a veterinarian and save rare animals - but for now this is just a dream.
Verified by Tooba
Verified by Tooba
