HOLLYWOOD – An eight-year-old girl with a rare congenital condition that caused her heart to be outside her chest is currently in the United States to seek treatment.
Virsaviya Borun, who was born in Russia, suffers from thoraco-abdominal syndrome, otherwise known as Pentalogy of Cantrell, which affects five in a million people.
Her heart is protected by only a thin layer of skin, while she is also missing part of her chest bones, a diaphragm and abdominal muscles.
A video posted on YouTube on Monday (Sept 18), titled VirsaviyaWarrior, shows Virsaviya’s heart pushing out of her chest as she giggles.
Her story first came to light in 2015, when Virsaviya’s mother Dari Borun launched a
The campaign has raised over US$71,000 (S$95,600), although the last donation made was in August 2016.
Ms Borun had travelled to Florida in the hopes of her daughter undergoing surgery, but was told that Virsaviya’s blood pressure was too high.
Virsaviya, who enjoys dancing and drawing, was
“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.
“I walk around, I jump, I fly, I run, I’m not supposed to run but I love running.”
Ms Borun also revealed that doctors had warned her to expect the worst when Virsaviya was born, but she has since 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,” she added.
