Bea Kovacs
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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.
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Lidia and Karol change Miranda’s dressings. It took 2-3 hours to change the dressings and these were the most important and most painful events of Miranda’s days.
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She couldn't sit for long because of her wounds. She spent most of her days in bed, well-cushioned.
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Miranda could not walk for long, she became easily tired, but when it was about dancing, there was no obstacle. She often danced on her birthdays.
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In recent years, Miranda allowed Karol and Lidia to change her dressings only every other day.
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After exhausting bandage-changes, she liked to retreat to her room.
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Soft plush toys don’t damage her skin while playing.
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On her birthday, despite her surprise and joy, she didn't eat much of the cake. Due to the illness, her teeth were in poor condition, and also the frequent stomach pains made it difficult for her to eat.
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As a birthday present, she was able to visit Budapest Zoo, where children showed much kindness to her. It was great joy for her to be in their company.
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Lidia occasionally pushed Miranda over to their relatives so she could be in children’s company, and leave the house for a while.
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Due to the risk of infection, Miranda was not allowed to spend long periods of time in water, but used dressings could only be removed after soaking.
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Removing dressings stuck to the wounds caused severe pain.
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Although Miranda lived with her grandmother, during the long years of serious illness, mother and daughter grew closer to each other.
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On 4 November 2020, Miranda's body gave up the fight with EB. Lídia, according to Roma tradition, prepared a wedding dress for the funeral.
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On 4 November 2020, Miranda's body gave up the fight with EB.
At her funeral, she was accompanied by her favourite toys.
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Her grandmother and mother said goodbye to Miranda with twelve white doves.
