Six-year-old Virsaviya Boron was born with her heart and intestines outside her body. Photo / Instagram
When Dari Borun was pregnant, doctors told her her unborn child would not survive.
But six years later, her daughter, Virsaviya Borun is defying the odds.
Her condition, Pentalogy of Cantrell, which appears in 5.5 of every million live births, caused her heart and intestines to form outside her body.
Born in Russia, Virsaviya and her mother moved to Florida in the US in the hope of seeking treatment in Boston for the condition which, if left, could be fatal.
While Florida's warmer climate has meant better health for Virsaviya, medical experts have deemed the girl inoperable at the moment due to high blood pressure in her pulmonary artery. She will be re-evaluated in two years.
In the meantime, her mother has appealed to the public asking for donations to cover her daughter's medical bills and basic living expenses. She says she gets by on very limited means being a single mother to a special-needs child with no other family in the US.
So far she has raised (US) $11,790 through crowdfunding site youcaring.com with a goal of reaching $20,000.
Boron has also shared photos of Virsaviya on Instagram which reveal her heart, the size of a fist that, beating beneath a thin layer of skin.
Virsaviya is unable to attend school due to her condition but is learning English and loves art and music.
The pair also relies on their faith for strength:
"I know why I have heart outside [sic]," the 6-year-old told nbcmiami.com, "Because Jesus want to show he can make special things like me."
- nzherald.co.nz
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