Virsaviya, who originally comes from Russia now lives in South Florida with her mother. She suffers from Pentalogy of Cantrell, a rare congenital condition which occurs in around 5.5 per one million live births.
The condition causes babies to be born with vital organs on the outside of their bodies. The severity of the disorder differs from case to case. In Virsaviya’s case, her heart and intestines are located outside of her chest and abdomen.
The little 6-year-old girl’s heart can actually be seen beating outside of her abdomen,
covered by just a thin layer of skin. Given that the heart isn’t protected by the ribcage, the condition can be fatal as a slight bump or fall could cause significant damage or worse.
Luckily for Virsaviya, her mother Dari Borun found a doctor at Boston’s Children’s Hospital willing to treat her daughter’s rare ailment. But, although she desperately needs surgery to correct the issue, Virsaviya cannot be operated on for at least another two years due to her high blood pressure.
Virsaviya ‘Bathsheba’ Borun-Goncharova remains positive, loves ponies, dolphins, drawing, singing, dancing, and especially dancing to Beyoncé.
You can help Virsaviya by sharing her story and by going to vbheart.