Little Virsaviya Borun-Goncharova is just like any other six-year-old, albeit perhaps one from a Burberry ad – she loves Beyonce, singing and ponies. But, there’s one thing the tiny Russian native (now living in Florida) has had to deal with that her friends haven’t: she was born with her heart outside of her chest.
Virsaviya was born with a rare condition called Penology of Cantrell, occurring in just 5.5 per one million live babies. The condition means vital organs develop on the outside – for the six-year-old, it’s her heart and intestines.
While her heart is not protected by her rib cage and so there is significant risk of damage to the organ, which can be fatal, it appears it is protected by her spirit.
In a remarkable video posted by her mother, Dari, on Instagram Virsaviya’s tiny body is hooked up to medical equipment while she coughs, showing the detailed outline of her heart. When asked if she is ok, her Frozen-stickered head nods as she smiles.
Virsaviya will need surgery to correct the condition, but due to her high blood pressure she is to wait two more years.