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.