Rainbow for Ivanka

Rainbow of Ivanka - support for me regarding craniofacial surgery  and project - new campaign  for children with Goldenhar syndrom Bank account : 222 200 200/0900, IBAN: SK61 0900 0000 0002 2220 0200, variate symbol:13640. and write - GOLD.   http://www.joj.sk/televizne-novinky/trapenie-dievcata-so-znetvorenou-tvarou-cely-zivot-sa-mi-vysmievali-a-ponizovali-ma.html http://www.ta3.com/nadacia-ta3.html   My name is Ivanka. I am 27 years old. I am a young, courageous and in my opinion also very ambitious young woman fighting for her dreams, success in life and overcoming life obstacles, which, unfortunately, the fairies have cast as a spell on me. but there has never been a reason to feel that I am different or that I cannot pursue my desires. I have never given up my success and desires due to medical difficulties as I have overcome an acute leukaemia and 4 heart surgeries. I have had my law graduation diploma with A marks for a year now. the law is my passion, I feel it as a mission – helping people. I have been inspired by chance by the medical law. I am thankful to be one of triplets. Thanks to my two siblings I have been given not only hope, but also a great chance from my childhood to be grown up as a normal kid. 28 August 2014 when I was told the truth about my diagnosis. Goldenhar syndrome is a very rare diagnosis with lots of variable sub-diagnosis including the cleft lip, cleft spine and malformation of one half of a face or both parts, severe diseases of heart, kidneys, lungs and oncologic diseases. And I have been struck by the heart problem, leukaemia and malformation of one half of my face – right part around the ear, jaw graft and part around the eye. I have decided to fight as much as I can for my only dream in spite of the fact that many people have been throwing logs under my feet in the recent month. I am a fighter, I have the strength of hope and a great desire to show respect to my mum. I am the only one who knows that from the first moment she held me in her arms she gave me abundance of love. It was an absolute, unique love of a mum inspired by the fact that we were children our parents longed for. She loved me from the first moment she saw my face. My dear mum once told me: How could I only assume what a miracle is hidden in the bundle? I was a pleasure for my mother – an infinite source of the wonder of willingness to fight. I will not give up, because the only reason why I am still living, why I have decided to fight and to be a successful lawyer in the field of medical law is my dearest mum.  I am thankful to my dearest mum that I am the kind of a girl I am. For a month and a half I have been looking every day for a sun of new hope, new smile for children like me, because I have been tortured by the immoral decisions of our system, decisions of people, a lack of willingness to help is the worst thing they can do to these children. They are kind and unique people, who deserve the hope for a new smile when they are adult.   My charity project “Rainbow for Ivanka” – swan´s fly upwards – hit my mind and there was nothing else to think about. My steps have been directed to managing it all. I like fashion, I like reading news from the catwalk and about fashion celebrities. It was my dream to be a model and to walk on the catwalk, but I have understood that this dream will never come true. I perceive the magic of beautiful link of colours, style and uniqueness. In my opinion, lots can be told about various areas of life and topics by fashion and accessories. This is why I have decided to link my campaign with Fashion Live, because I am a rainbow child and the rainbow is a symbol of hope, strength, fragility, purity and that is also the fashion. My goal and life wish is to fight for kids like me in Slovakia and in the Czech Republic. To be honest, I cannot and I would not leave the issue as it is now. My soul and my heart cannot understand why the topic of Goldenhar syndrome has remained unknown and left with no help for the whole 20 years. There is no foundation, project or campaign. And the reason is that in Slovakia and in the Czech Republic there are only about 30 children with this diagnosis and it seems like there was not enough time and space for the medical science and the society to find a solution and to help these children, I think. I have decided to fight for other children, too.