Virsaviya Borun-Goncharova was born with an incredibly rare condition which 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 which 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.
‘He thinks her heart is something magical and beautiful. He will just lie on Virsaviya so that he can feel her heart beating against his skin. It’s beautiful to watch.’
The condition, called Pentalogy of Cantrell, only affects around one in a million live births and doesn’t cause the youngster 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.
She said: ‘Sometimes it can be difficult when my oxygen levels are low and I feel lightheaded and dizzy. But I love staying active and singing and dancing with my friends.
‘This past year has been boring because we haven’t been able to go anywhere or do anything but spending time with my brother has been nice.
‘I get a lot of messages from fans on my Instagram telling me that I’m inspirational which is really kind.
‘My heart is different, but it makes me completely unique and I love that.’
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