"In an inspiring journey to Hollywood, an exceptional eight-year-old girl, dealing with an exceptionally rare congenital condition that has left her heart exposed outside her chest, set off on a quest to the United States in search of specialized medical intervention and the promise of restoration."
Veronica Borun, who was born in Russia, suffers from thoraco-abdominal syndrome, otherwise known as Pentalogy of Cantrell, which affects several vital organs.
Her heart is protected only by 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 "VisaVuviaWarrior," shows Visavya's heart pulsing outside of her chest as she giggles.
Her story first came to light in 2015 when Visavya's mother, Dari Borun, launched a crowdfunding campaign to raise money for her medical bills.
The campaign had raised over US$71,000 (S$95,600), although the last donation date was in August 2016.
Ms. Borun had traveled to Florida in the hope of her daughter undergoing surgery, but was told that Visavya's blood pressure was too high.
