Luka Dakskobler

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. 

  • Barbara waits for her defectologist Nada Slana to take her to elementary school in Dornava where she joins first graders once a week. Dr. Marijan Borstnar rehabilitation institute in Dornava, Slovenia, April 5, 2012.
  • Barbara solves mathematical tasks in a computer software by showing the result with movement and looks. Her defectologist Nada Slana shows her possible answers and monitors the response. However, Barbara's communication is so good, that Nada notices her answer without specifically asking or pointing at possible answers. Dr. Marijan Borstnar rehabilitation institute in Dornava, Slovenia, March 19, 2012.
  • Nada Slana works with Barbara in the classroom and takes care of her all the time. She helps Barbara solve mathematical tasks in first grade school books. They communicate visually. Dr. Marjian Borstnar rehabilitation institute in Dornava, Slovenia, March 19, 2012.
  • Barbara cannot hold a grip so her pencils are fitted with a foam handle so she can hold it easier. Her defectologist Nada Slana helps her control her moves when they color or draw. Dr. Marijan Borstnar rehabilitation institute in Dornava, Slovenia, March 19, 2012.
  • Barbara regularily visits therapies in the rehabilitation institute to improve her mobility and relax her body. During physiotherapy she is placed in positions she could never achieve herself. These positions that are irregular to her disease help the body to relax. Dr. Marijan Borstnar rehabilitation institute in Dornava, Slovenia, on May 30, 2012.
  • Occupational therapist Helena Horvat helps Barbara click on an adjusted keyboard to play a video game in Dr. Marijan Borstnar rehabilitation institute in Dornava, Slovenia, on May 30, 2012.
  • During occupational therapy Barbara not only plays video games where she practices typing and directional skills and reaction, but also improves her hand grips etc., all of which helps her in some way to deal with normal daily activities where one day she could be able to hold a toothbrush etc. Dr. Marijan Borstnar rehabilitation institute in Dornava, Slovenia, on May 30, 2012.
  • Barbara laughs while sitting at the table waiting for lunch in Dr. Marijan Borstnar rehabilitation institute in Dornava, Slovenia, on May 30, 2012.
  • Nada Slana, Barbara's defectologists, feeds her in dr. Marijan Borstnar rehabilitation institute in Dornava, Slovenia, March 19, 2012. Even during lunch, Barbara amuses the nurses and they amuse her. The room is full of laughter. Unfortunately, Barbara also has difficulties swallowing food.
  • Nada brushes Barbara's teeth in dr. Marijan Borstnar rehabilitation institute in Dornava, Slovenia, May 30, 2012.
  • Barbara bursts out in laughter before taking a rest after lunch in dr. Marijan Borstnar rehabilitation institute in Dornava, Slovenia, March 19, 2012.
  • Barbara rests calmly in her bed, watching cartoons after lunch in dr. Marijan Borstnar rehabilitation institute in Dornava, Slovenia, March 19, 2012.
  • Dog assisted therapy has proven a good way to relax Barbara's body, because dogs have a relaxing effect on people. They are also very motivational. Barbara wants to cuddle with Sisy so she tries harder to control her body. Dr. Marijan Borstnar rehabilitation institute in Dornava, Slovenia, July 4, 2011.
  • Barbara reaches out to pet Sisy during dog assisted therapy, a very irregular move for her illness. But she tries and she is somewhat successful. Dr. Marijan Borstnar rehabilitation institute in Dornava, Slovenia, July 4, 2011.
  • Barbara embraces Sisy during a dog assisted therapy that strengthens her ability to control her limbs and relaxes her. Dr. Marijan Borstnar rehabilitation institute in Dornava, Slovenia, September 29, 2011.
  • The effects of dog assisted therapy on Barbara or astounding. She relaxes enough to almost fall asleep, breathe peacefully, her hands unclenched, arms resting on the floor. Dr. Marijan Borstnar rehabilitation institute in Dornava, Slovenia, July 4, 2011.
  • Nada takes Barbara to a regular elementary school in Dornava. If the weather is nice, they go on foot, because they only have a five-minute walk from the institute. Dornava elemetary school, April 5, 2012.
  • Being so intelligent, Barbara attends first grade class in a regular elementary school in Dornava, April 5, 2012.
  • Barbara's schoolmates communicate with her the same way she communicates with everybody. Movement and eyes. Everybody understands her. April 5, 2012.
  • Barbara's team cheers after they have won a bingo game, and completed the most mathematical tasks of all teams, while actively including Barbara in their task solving. Dornava elemetary school, April 5, 2012.
  • Barbara's father Stanislav, her sister Petra and her brother make easter eggs in the kitchen of their home in Zavrc, Slovenia, April 7, 2012.
  • Barbara's mother Bozena, her sister Petra and brother Andrej help Barbara paint easter eggs during easter holidays in their home in Zavrc, Slovenia, April 7, 2012.
  • Barbara's sister Petra and brother Andrej help Barbara paint easter eggs in her home during easter holidays, Zavrc, Slovenia, April 7, 2012.
  • Brothers Martin and Andrej, and sister Petra take Barbara for a ride around their family house in Zavrc, Slovenia, April 7, 2012.
  • Barbara's brother Andrej throws Barbara in the air in a play Barbara loves a lot, in front of their house in Zavrc, Slovenia, April 7, 2012.
  • Barbara's brother Andrej holds her hand in their parent's bedroom in their home in Zavrc, Slovenia, April 7, 2012.
  • Barbara, her brother Andrej and Martin and her sister Petra play a board game in the kitchen of their home in Zavrc, Slovenia, April 7, 2012.
  • Barbara participates in practically all activities in the rehabilitation institute. The spring themed play seen here was an excercise in understanding and communication. Dr. Marijan Borstnar rehabilitation institute in Dornava, Slovenia, March 19, 2012.
  • Barbara and her defectologist Nada Slana ride a swing outside dr. Marijan Borstnar rehabilitation institute in Dornava, Slovenia, March 19, 2012. Nada spends most of her time with her, washing her, dressing her, playing with her and participating in every possible activity in the rehabilitation institute.
  • After being on a waiting list for some time, Barbara finally received the eye controled communicator that allows her to speak, say anything she wants, read, watch photos etc. in May 2012.
  • She can read books and flip through albums. In the future when she grows up and fully masters it, she'll be able to use the on-screen keyboard, browse the internet, have a Facebook profile, or send emails. Dr. Marijan Borstnar rehabilitation institute in Dornava, Slovenia, October 12, 2012.
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