Meet the girl with her heart outside her chest: Six-year-old is beating the odds after being born with rare and life-threatening birth defect

Virsaviya Borun, a native of Russia, suffers from Pentalogy of Cantrell, which caused her heart and intestines to form outside her body

It is a rare congenital condition that occurs in estimated 5.5 in one million live births

Virsaviya's heart is the size of a fist and can be seen beating through a thin layer of skin

Borun and her mother came to the US this year to seek medical treatment for the girl in Boston

The 6-year-old cannot undergo surgery at the moment because of high blood pressure in her pulmonary aorta

 Source : By SNEJANA FARBEROV FOR DAILYMAIL.COM 

Six-year-old Virsaviya Borun has been beating the odds her entire life, having been born with her heart and intestines outside her chest and abdomen.

Virsaviya, a native of Russia who recently moved to South Florida with her mother, suffers from multiple birth defects caused by Pentalogy of Cantrell - a rare congenital condition that occurs in estimated 5.5 in one million live births.

Virsaviya’s heart, which is about the size of a fist, could be seen beating against her abdominal area, protected only by a thin layer of skin.

Out of body experience: Virsaviya Borun, 6, a native of Russia, suffers from a condition called Pentalogy of Cantrell, which caused her heart and intestines to form outside her body

Her intestines are also outside her body and she has no abdominal muscles or a diaphragm.

'When I was pregnant, the doctor said she will not survive, that she is going to die,' the girl's mother, Dari Borun, told NBC Miami.

Six years later, Virsaviya, who also goes by the biblical name Bathsheba, is a bright and lively girl who enjoys drawing ponies, attends art classes and loves dancing to Beyonce’s songs.

In early 2015, Ms Borun, who has been raising Virsaviya on her own, found a doctor at Boston's Children's Hospital willing to treat her rare ailment.

Pentalogy of Cantrell often requires surgery, depending on the severity of the patient’s defects, and could be fatal if left untreated.

But the medical team in Boston said Virsaviya cannot undergo surgery at the moment because she has high blood pressure in her pulmonary aorta.

The girl will be evaluated again in two years to determine if it would be safe for her to undergo an operation.

Ms Borun has appealed to the public for help, asking for donations to cover her daughter’s medical bills and basic living expenses, saying she has very limited means, being a single mother of a special-needs child with no other family in the US.

The mother and daughter have recently moved from Boston to Hollywood, Florida, because Virsaviya is unable to live in a cold climate.

In sunny Florida, her mother says the 6-year-old’s heart feels warm and she does not get sick as often as before.

Since coming to the US to seek medical treatment last winter, Virsaviya has been learning English, although she does not currently attend school because of her condition.

While awaiting treatment, Virsaviya fills her days with art, music and dance. The mother and daughter also rely on their faith to keep them strong in the face of adversity.

‘I know why I have heart outside,’ says the 6-year-old knowingly. ‘Because Jesus want [sic] to show he can make special things like me.’

The family have launched a fundraising page on Youcaring.com titled Bathsheba’s Heart. So far they have raised $11,790 with a goal of $20,000.