Virsaviya Borun-Goncharova was born with an incredibly rare condition that means her rib cage and abdominal muscles did not form properly when she was in the womb.
As a result, the 11-year-old, from Florida, has a heart that has developed outside of her chest.
When Virsaviya’s mother, Dari, was pregnant, she was told that her daughter was likely to die either during pregnancy or birth. But Virsaviya defied the odds and survived, and is now a thriving pre-teen who enjoys singing, dancing and playing with her friends.
Dari said, “Doctors told me that my daughter would die during pregnancy or during the birth. She truly is a miracle and I love the way she is. She is absolutely unique. She is one in a million.”
Her brother, Ervin, loves to get close to his sister’s heart and to touch and rest his hands and face against it.
The condition, called Pentalogy of Cantrell, only affects around one in a million live births and doesn’t cause Virsaviya pain in day-to-day life. It does, however, leave her heart exposed as it lies just below the surface of the skin.
This means Virsaviya has to be careful not to bump her chest – as this could be incredibly serious or even fatal. To protect her heart and prevent any injuries, she usually wears a chest covering.
Virsaviya also suffers from conoventricular VSD – a condition where she has a hole in her heart where portions of the ventricular septum should meet.
Over the years, Virsaviya has spent lots of time in hospital and sometimes needs an oxygen tank to stop her levels from dropping too low.
Dari added, “It’s not easy for Virsaviya to live with her heart on the outside of her chest because it’s really exposed and fragile, since it is just below the surface of the skin.‘At times it can cause both myself and Virsaviya anxiety to know just how vulnerable she is.”
But Virsaviya says while she knows her condition has significant risks, she isn’t letting it hold her back.
