Epidermolysis Bullosa (EB) is a rare inherited skin disorder. Any trauma to the skin cause painful blisters and in severe cases blisters may occur on internal organs. EB children are also referred to as butterfly children, for the vulnerability of their skin even to butterfly wings. Miranda (12) suffered from a severe type of EB. She lived in Tiszakécske with her grandmother, Lidia, who was both her guardian and her company, as she was a private student. She was also cared for by her mother, Karol, who also lives in the city. In addition to the physical and mental burdens, social isolation, the disease also caused financial difficulties ; the family could not buy all the necessary medicines and equipment for her.
There are officially 200 EB patients registered in Hungary but the number may be more, according to experts. There is no cure for EB, its severe forms, like Miranda’s, are fatal.
After 12 years of struggle, the girl’s body gave up fighting EB and she died on 4 November 2020.