A smiling red-winged butterfly holds a yellow flower. In front of him, there are a tiny teapot and two teacups, rendering him fully prepared for a pleasant tea party. Nearby, one can see a butterfly girl with lilac-colored wings and a playful hair bow, she brought a cake to the event. These two postcards were designed by the artist Kateryna Stepanishcheva for a charitable project aimed to support children who suffer from a rare genetic disorder called the epidermolysis bullosa. Such children are also called “butterflies.”
“Before joining this project, I never heard anything about the epidermolysis bullosa, or even about the orphan diseases in general,” Stepanishcheva told us. “By making these postcards, I wanted to bring a sense of comfort, joy, and sunny atmosphere which should fill every child’s day.”
Apart from Stepanishcheva, the artists Marta Koshulynska, Dasha Rakova, and Ania Khromova worked on the postcards, and the Bratske Publishing House will release these postcards very soon. There will be five of them in the set. All proceeds of the sale will go to the Debra-Ukraine Foundation, which cares for children diagnosed with this disorder.
“The idea of the project arose after I communicated with the dermatologist Liudmyla Derevianko. I turned to her for help with some issues of my own and learned in a conversation that there were such butterfly children. I also learned that both she and her granddaughter Yeva were helping the Debra-Ukraine Foundation. It was enough to look at the foundation’s webpage to understand the condition of these children,” The Day’s reporter heard from Oksana Lushchevska, a writer, translator, and researcher of children’s literature who came up with the idea of this charitable project. “I did a series of postcards with the Bratske Publishing House before, with the proceeds used to buy books for children of the Donbas. That series sold well. Therefore, I decided that postcards could be used to convey information about this orphan disease as well.”
Doctor Derevianko, who is a dermatologist, Class 1 physician, candidate of medical sciences, and president of the international NGO Dermatologists for Children, noted that the epidermolysis bullosa was not even a single condition, but a rare group of inherited disorders.
“Doctors have already described about 30 types of it, all featuring a genetic defect bringing about a lack of the necessary components for normal functioning of the skin, such as collagen and other proteins,” she continued. “Children with such a disorder do not gain weight, and they usually have all their organs and systems functioning poorly. They suffer from anemia, have ulcers appearing practically everywhere: on the skin, on the mucous membranes of the internal organs, in the oral cavity, eyes, respiratory tract... Because of this fragility of the skin, they are called butterfly children. Even a mother’s touch, which is usually healing, causes pain for a patient who has this disorder. These children need, above all, special dressings. They are very expensive. The family of one of our worst-affected patients has to spend 13,000 hryvnias per day on these dressings. Also, this is a very painful condition. The government is unable to cover all necessary expenses incurred in supporting such children. It provides some funding, but it is not enough at the moment. Therefore, the greater the awareness of the public about the orphan diseases, the better. Even a small amount of money can help. In addition, such children need social support, inclusion.”
Stepanishcheva is confident that she will be able to draw attention to this problem. “We all, meaning the project’s participants, really want to support the children and families who have been hit by this genetic disorder. It seems to me that in such a situation, it is very important to understand that you are not alone and there are people who care about you,” explained the artist. “With these postcards, we aim to reach the hearts of people, as well as convey all our love to the butterfly children and to say in this way that they have friends in everyone who will join the project.”
