“Special Heart Child: The Brave Journey of an 8-Year-Old Girl with an External Heart, Overcoming Pain and Embracing Destiny to Seek Joy in Life and Inspire Others”

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 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.

 

 

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