Stories: THE GIRL INSIDE

Barbara Jurgec is a good-humoured teenager from Slovenia. She has severe cerebral palsy with all parts of her body and functions severely affected. She is very spasmodic, 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. 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 managed to insulate the house with the help of donations raised by this report. 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. In 2012, she received an eye-controlled communicator that would open a whole new world for her. It is packed with symbols tailored for her. She clicks on a symbol by concentrating her look, and the communicator says the words behind the symbol out loud. It will also allow her to read books, browse through photo albums, use Facebook, email etc.