“In a poignant journey to Hollywood, an intrepid eight-year-old girl, who grapples with an exceptionally rare congenital condition that has left her heart vulnerably outside her chest, has embarked upon a voyage to the United States in pursuit of specialized medical intervention and hopeful restoration.”
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.
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 crowdfunding campaign to raise money for her medical bills.
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.
