Virsaviya Borun, an 8-year-old Russia girl is just like other kids her age except for one big difference, she carries her heart outside her chest.
Virsaviya Borun suffers from the thoraco-abdominal syndrome, also known as Pentalogy of Cantrell, which affects only five in a million people.
Virsaviya was born with her heart outside her chest and is currently in the United States to seek treatment for the condition. Her heart is protected only by a thin layer of skin. She is also missing part of her chest bones, diaphragm, and abdominal muscles.
Virsaviya’s narrative reached the masses in 2015 when her mother Dari Borun launched a crowdfunding campaign to raise money for her medical bills. The campaign has raised over US$71,000 although the last donation made was in August 2016.
Dari Borun had travelled to Florida to get Virsaviya undergo surgery but was told that Virsaviya's blood pressure was too high.
Virsaviya featured in the BBC series Incredible Medicine: Dr Weston's Casebook in February this year.
"This is my heart. I'm the only one that has this," she said. "When I'm getting dressed, I put soft clothes on to not hurt my heart.Â
"I walk around, I jump, I fly, I run, I'm not supposed to run but I love running."
She enjoys dancing and drawing as well.Â
Dari Borun said that doctors had cautioned her to expect the worst when Virsaviya was born but she has defied the odds.
"It's not easy for Virsaviya to live with her heart on the outside because it's really fragile. She has to be careful as of course she can fall and it can be really dangerous - she can die from that," said Dari.
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