Barbara Jurgec is a good-humoured young teenager from Slovenia. She has severe cerebral palsy with all parts of her body and functions severely affected. She is very spasmic, unable to speak, head and tongue hardly controlled, her arms outstretched sideways and waving… But despite this severe condition, she is one of rare cerebral palsy patients who are mentally quite healthy and intelligent. Furthermore, she is one of the rare such cerebral palsy patients who found a way to communicate with the outside world. Barbara communicates through her eyes, her slight mimics and head movemement. Extensive tests have been made to confirm her intellect, her uniqueness, and she was given an eye-controlled computer that would open a whole new world for her. Her ability to communicate and her intellect also enable her to study, joining a first class of an elementary school twice a week, and studying with the help of a computer and textbooks in the institute. Her family lives in the remote village of Zavrc near the Croatian border. She has three sisters and two brothers. Her mother is unemployed, her father works all day to earn hardly enough for the family to make it through the month. They live in a very modest house that was left unfinished for a long time, allowing humidity to invade it. The result are cracked and mouldy walls, damaged furniture. Recently they somehow managed to insulate the house, but the damage from humidity still needs to be repaired. With children in school, father working all day, mother unable to lift Barbara to take care of her, and because of the severity of Barbara's illness, she lives in a rehabilitation institute some 20 km away and comes home for the holidays. Although she is rarely in a bad mood or sad anyway, she is of course most happy at home.
The story took a year to produce, primarily as a photo story for National Geographic Junior (Slovenia) and as means of triggering humanitarian action. Eventually, we raised 20,500 eur with the help of Slovenian national television and people are still trying to help in different ways. Barbara and her family deserve it. In September 2013, I will start on the 2nd part of the story - Barbara's life and the results of our help.
The photo story won overall best story at Slovenia Press Photo 2013 as well as best story in People category at that same competition. This multimedia won SOFA GLOBAL's competition Slovenia - Through the Lens of Human Rights in June 2013.
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