30 Oct 2015

Virsaviya Borun - the girl with her heart outside her chest

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

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 1million 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.

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 name Bathsheba, is a bright and lively girl who enjoy drawing ponies, attends art and dance school, and loves dancing to Beyonce’s songs.

In early 2015, Ms Borun, who raises 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 help her 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, and no other family in the US.

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.
 

Virsaviya Borun - the girl with her heart outside her chest

Virsaviya Borun - the girl with her heart outside her chest

Virsaviya Borun - the girl with her heart outside her chest
Credit: Snejana Farberov/Daily Mail

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