2000:"Her little brother Ervin loves touching and listening to her heart. FLORIDA, USA: MEET THE girl born with an incredibly rare condition that means her heart beats OUTSIDE of her chest. Virsaviya Borun-Goncharova (11) from Hollywood, Florida, USA, was born with an extremely rare condition called Pentalogy of Cantrell. The condition caused her rib cage and abdominal muscles to not form properly during pregnancy. In Virsaviya?s case, this led to her heart developing outside of her chest cavity. She also suffers from conoventricular VSD, a condition where she has a hole in her heart where portions of the ventricular septum should meet. The condition which only affects around one in a million live births doesn?t cause the 11-year-old pain in day to day life but does leave her heart exposed as it lies just below the surface of the skin. When Virsaviya?s mother, Dari (31) was pregnant, she received the devastating news that her daughter was likely to die either during pregnancy or birth, but Virsaviya not only survived but has thrived to become a typical pre-teen. Virsaviya enjoys fashion, singing and playing with friends ? but she must be careful because of her exposed heart. To combat any injuries, Virsaviya often wears a chest covering to protect her heart as a bump or fall could prove fatal. Dari originally moved with Virsaviya from their former home in Russia to the United States in 2015 with the hope that surgery to close the hole in her heart would allow Virsaviya to live a more normal life. However, due to high blood pressure that affects the arteries in her lungs, this hasn?t been possible. Virsaviya?s condition has led to her spending significant periods of time in hospital. At the start of 2020 she suffered from sudden drops in her blood oxygen level which caused dizziness and breathlessness. This ended up with Virsaviya being rushed to the emergency room, followed by a two week stay in hospital being monitored by doctors to ensure her oxygen levels stabilised. W 32:"mediadrumworld.com / @legendari_
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