Hi my name is Nikolina and together with Nadja Lukic who is a mother herself,one of the most beautiful,unselfish,generous,caring people I have ever met and known all my life,with the child with special needs as well are fundraising for my beautiful little niece Žana… Žana Turniški is a 5-and-a-half-year-old girl. She lives in Zagreb, Croatia. She was born with a congenital heart defect. The diagnosis was a hypoplastic left heart (the complete left side of the heart did not work). When she was only 8 days old, she had her first operation, which at that time was not performed in Zagreb, and in agreement with the doctors from Munich, she was accepted into their hospital because they saw in her a fighter for life and decided to save her. When she was 5 months old, she was in Zagreb for a second operation, because hypoplastic hearts usually require three operations, sometimes even more. She was excellent after those procedures until she was one and a half years old, when she was put on the transplant list due to weakness and the right side of her heart that could not bear the load. While she was waiting for a new heart, Covid began to spread across the globe and at one point the transplant list was stopped, we were in complete isolation for three years because we were protecting her from infection, but even then we did not lose hope that a miracle would still happen. We carried her in our arms and watched her get weaker every day (she couldn't get up or down to a lying position by herself, she didn't crawl, she didn't walk, she wore diapers all the time, we fed her, dressed her...), For less than two years, she waited for a heart that did not arrive, and at one point her organs started to fail, she started turning blue, her capillaries burst, she defecated in agony, she could hardly eat anything, and she was hungry and asked us to open the fridge for her to choose what she wants. Our hearts were breaking going through all that with her. Then the doctors put her on palliative care and she should have been kept in the hospital, but I, as a mother, refused. I wanted her in such a fragile state to be with her loving family, surrounded by peace, love and songs, not the white coats and gray of the hospital. Every day I waited for her to die in my arms. Two and a half months after the decision to go to palliative care, on Easter itself, we received a call at night that was very carefully handled because they did not know if Žana was still alive. In shock, my husband and I took her to the hospital and she was gifted a new heart. She spent 4 months in the hospital because she was recovering well, but slowly (from the difficult condition she was in, everything needed to fall into place). Three weeks after the transplant, they did a tracheostomy and put a cannula in her throat because they couldn't take her off the ventilator. She recovered little by little and when she came home from the hospital after 4 months, she still neither crawled nor walked, she wore diapers, she ate more or less through a large syringe of mixed food. At home, we also took care of the cannula she had. It was a challenge to even go outside for a walk with her and push her in a stroller, because we had to constantly extract secretions (mucus) from her cannula, so that she wouldn't suffocate. She managed to overcome everything with us at home and recovered very quickly with us. She crawled on her bum pushing herself with her hands, walked, got rid of her diaper, started eating, playing... A cheerful and positive little girl, a miracle of a child about whom I am currently writing an autobiography and creating a picture book. With the book and the picture book, I want to encourage other parents who are having a hard time, not to lose hope and to be strong. My wish is to make the people around us aware that they should not avoid us or be afraid of our children, but allow them to integrate into society. They are different because they have had a hard time in life, but they are happy and joyful children because they have survived the impossible. Two years have passed since Žana's heart transplant and we are proud of her. They filmed it on our television and there was an article about it in the newspaper. It was displayed on posters all over Croatia. I am sorry that our country does not finance such projects and I hope that good hearts will come together and help that our dream becomes reality,that the book and picture book about the brave and inspiring little girl Žana see the light of day. Thank you from the bottom of my heart, good people Žana’s mother Vedrana Kovačević(Turniški)
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