If there is a true symbol of a daily struggle against life’s odds, then its name is Virsaviya Borun Goncharova, the 7-year-old girl born with her heart outside her chest. Each time she giggles and laughs, her heart pushes out even further. Virsaviya had traveled all the way from Russia to the US earlier this year in hopes of undergoing a lifesaving operation.
The 7-year-old girl suffering from a rarest of rare conditions called Thoraco abdominal syndrome hopes to pull through from the operation. At present, her condition also called Pentalogy of Cantrell affects only 5 in a million people.
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When this little fighter was born, her mother was told to prepare for the worst. Instead, she defied all odds and stunned doctors with her positivity and bubbly nature. In the US, Virsaviya is patiently waiting for her life changing surgery and is now on medication to lower her blood pressure. Cheerfully she told the BBC, ‘This is my heart. I’m the only one that has this.
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Virsaviya’s story first hit the internet in 2015 and immediately went viral. At the time she was just six but as cheerful as ever. At the time her parents were at a loss as to what should be their course of action. They also began a funding project for Virsaviya where many responded.
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Virsaviya when interviewed said "I like to draw Jesus, ponies and angels, I don't go to the school and I don't go to the ballet but I want to do it at home." Virsaviya’s heart is outside her chest and the size of a little fist. It has been that way since birth.
Virsaviya is quite a spritely girl who told the BBC that “I just walk around, I jump, I fly, I run. Well I am not supposed to run but I love running.’
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In Dari’s words Doctors told me Virsaviya had a really rare condition. But they said she won’t survive. ‘When I saw the first time how her heart was beating, of course to me it was something special. ‘It meant that Virsaviya’s alive and she can breathe and she can live.’ At the time, the girl’s pressure was too high to operate.
It has been two years since 2015 and both Mother and daughter share optimistic views that everything will go well. “I was really upset about that because they kept telling me she will die soon” said her mom. ‘It’s not easy for Virsaviya to live with her heart on the outside because it’s really fragile.
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It isn’t the heart born outside her chest which is the only problem. Her heart is just covered by a very thin layer of skin. She is missing some part of her diaphragm and part of her chest bones and abdominal muscles. She also has some of her intestines outside her body.
For six years Dari has been running between doctors in Russia but she was finally given hope by a doctor in Boston. She is a single mother and is in the process of collecting funds for her daughter’s operation.
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Both mom and daughter seem to be very close to each other, Bari, on the other hand, knows that her little fighter is much stronger than she is. She never likes to show what she is suffering from, but she has no choice she has to live with her heart outside which is a very fragile situation.
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Dari a Christian is deeply religious and hopes and prays that her spirituality and God will see her through this ordeal that her little daughter has to face. In one of her Instagram posts she writes “Jesus is our best protein our prayers and happiness always helps to handle hard situations, our happiness brings love and joy to other people lives because Jesus is in us, we are alive, we are happy, we are strong.
Virsaviya’s mother is sometimes worried how long she can survive like this. Sometimes, the little girl will come up to her mother and ask her mom to touch her heart. “Every day, she comes over and asks me, 'Can you touch my heart?'"
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Although doctors warned that she would die, the little girl who also goes by the name of Bathsheba on Instagram shocked all by surviving for the last seven years. She loves Beyoncé, loves to draw ponies too and even attends art classes. Her condition though rare is also considered especially severe when the heart is displaced outside the chest completely or partially. It is known as ectopia cordis.
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The experts say that her prognosis is poor and will depend on the severity of her condition. Most affected with such conditions usually die in birth or within a few days. Virsaviya the girl with her heart outside her chest seems to be a miracle. We hope her operation is a success. Watch Virsaviya who is so vibrant and active in spite of her condition. She is a true warrior.