Crowdfunding project in support of butterfly children from Bashkiria collected more than 125 thousand rubles

Gulfiya Akulova

UFA, 2 April 2018. /Bashinform News Agency, Gulfiya Akulova/. In less than a month a crowdfunding project "Magic Keys for Butterfly Children" in support of children from Bashkiria suffering from epidermolysis bullosa, collected more than 125 thousand rubles and exceeded the threshold of donations by almost 30 thousand. Fundraising was used to purchase synthesizers and pay tutors for eight young residents of the republic with this rare disease.

"All indifferent people responded to our call for help. Such results cannot be achieved without a team", said Alina Khabirova, the head of the non-profit organization. "Preparation for the project lasted several months. We met all the families of the republic where the butterfly children are brought up. And these are 10 children-butterflies and 9 mom-heroines, in one family two children-butterflies are brought up. It is not a secret that we were very much concerned about the project and its implementation, and now we have crossed the 130%-threshold. Initially, the project supposed only introductory synthesizer lessons with a tutor. And now we will be able to give them even more classes. And, perhaps, it will not be weeks, but months of studies".

Piano or synthesizer classes are the forms of remedial hand gymnastics for children with such a rare genetic disease, the organizers explain. The disease is characterized by skin vulnerability - bubbles and erosions form on it just from a simple touch, it becomes fragile, like wings of butterflies. To prevent the fusion of fingers, butterfly children have to re-bandage every finger individually and to have daily the hands gymnastics. In this case, keyboard musical instruments become for them an excellent simulator in their fight against the consequences of the disease.

Total, there are 2-2.5 thousand children suffering from epidermolysis bullosa in Russia.

#butterfly children #crowdfunding

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