New Delhi: 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.
Virsaviya Borun has now flown to the US from Russia – to get the treatment. Several hospitals have turned her down due to the complicated nature of her surgery. The Children’s Hospital in Boston said they couldn’t operate due to her high aortic blood pressure. The mother-daughter duo have now moved to Hollywood in hope to find an appropriate treatment.
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 like to draw Jesus, ponies and angels,” said Virsaviya.
“I don’t go to the school and I don’t go to the ballet but I want to do it at home.
“My heart is right here.
“It’s outside of my chest and I really love my mom, she’s always touching my heart because she likes it,” reports Mirror UK.
Virsaviya’s heart, about the size of a fist, has always been outside of her chest since birth.
She is expected to require several very complicated operations.
The cheerful and talented child who loves dolphins, dogs, horses and Beyonce has had her entire life documented on her mother’s instagram account which shows hundreds of photos of the child.