Najbardziej boli mnie rozpacz w jej oczach. Błagam, pomóż mi walczyć o Agnieszkę!
Cyber-oko dla Agnieszki – by mogła porozumiewać się z rodziną
Ends at: 30 December 2017
Since I can observe what has happened to my child, I know that she’s being kept in the worst imprisonment, and that is her own body. A few months ago, it was Agnieszka who was helping me. Today I’m spending all my days around her bed. I wash her, tell her stories, change her clothes and bedsheets. And I cry, as I know that she will never come back to health.
I do know that the harm doctors had done is irreversible. In March 2016 Agnieszka passes a stroke. The regular story - hospital, a few weeks of rehabilitation and one can talk about returning home. Everything seems to be getting fine. One day Agnieszka goes out for a short walk with her dog. A few hundred meters away from home she falls down and hits her head. Her usual, happy life ends. An immediate diagnosis at the emergency ward leaves no doubts - another stroke and rapidly deteriorating health. After two weeks of hospitalizing, the condition of Agnieszka is still very heavy. Doctors decide for the tracheotomy, as she isn’t able to breathe on her own anymore. Then the avalanche of all bad things falls. As the result of a wrongly carried out intervention - the esophagus rupture - Agnieszka becomes crippled for life. From now on, parenteral nutrition is a necessity. In a critical condition the girl is sent to another hospital, where esophagus, staphylococcus and other dangerous bacteria attack her body. A month long she literally fights for life. When her condition is stable enough, the doctors make the decision to remove the tracheo-esophageal fistula. The procedure would allow Agnieszka to breathe on her own, without a respirator.
At the moment when the fate and actually the whole future of our daughter was being weighed, we encountered the greatest absurd in our lives! In order to perform the surgery, a written consent was necessary, and Agnieszka could not sign it since her body was completely inert. It took the court 28 days to establish the legal guardian! when it finally happened, it was too late for the operation. I felt like screaming out of helplessness. The doctor’s mistake and the institutional work took away my daughter’s chances of returning to health and normality- recalls Agnieszka's mother. In September, Agnieszka goes to a care and treatment facility. Instead of work there is hospital, instead of playing - pain and a hopeless situation, instead of helping others - waiting for others to help, instead of living - vegetation. Agnieszka is completely paralyzed, she is breathing via a respirator, she does not speak, she is fed parenterally. Every day I spent as much time as possible with Agnieszka, I talk to her, give her massages, feed her, hug and say how much I love her. Agnieszka’s eyes talk, but it is not always enough. Then I pull out the cardboard with letters I made myself, and laboriously, line by line, move ... Agnieszka winks at the right letter and so our conversation goes. It does take hours, and I cannot live with her at the resort. The solution is Cyber-eye - a device that allows disabled people to "talk". The monitor tracks the movement of the eyeballs, thanks to which people like Agnieszka can point the right answer with their eyes. This is the only chance for Agnieszka to express her needs and to communicate with people. The cost of the device is far beyond the financial possibilities of Agnieszka's mother. The daily expenses of treatment and rehabilitation absorb the majority of her pension.
I don’t feel defeated by Agnieszka's tragedy because I am able to fight for her life and health. Nevertheless, I’m broken by her desperate eyes when she wants to say something and I cannot understand her. Please, help me give my daughter at least some freedom ... Joanna, Agnieszka's mother