An incredible young girl has been fighting against all odds her entire life after being born with an incredibly rare defect that means her heart is on the outside of her body.
Virsaviya “Bathsheba” Borun-Goncharova was born with her heart and other organs on the outside of her rib cage meaning they are unprotected and very fragile
When she was born, her mother Dari Borun was told to prepare for the worst as they didn’t think she would survive with Pantalogy of Cantrell.
The condition only affects about five people in every one million.
Dari moved her daughter from Russia to the US in the hope that surgeons could put her heart back where it should be, but problems with Virsaviya’s blood pressure meant that she wasn’t strong enough for the procedure.
Dari said:
Doctors told me Virsaviya had a really rare condition. But they said she won’t survive. When I saw the first time how her heart was beating, of course to me it was something special.
It meant that Virsaviya’s alive and she can breathe and she can live.
We came from Russia to the US but when doctors checked her they said they could not help her. I was really upset about that because they kept telling me she will die soon.
Speaking to the BBC for Incredible Medicine: Dr Weston’s Casebook, the seven-year-old said:
This is my heart. I’m the only one that has this.
I walk around, I jump, I fly, I run, I’m not supposed to run but I love running.
Dari expressed how, although Virsaviya loves to dance and live like many other girls, life is not easy for her and she has to be very careful not to fall.
With her heart being so close to the surface, only protected by a thin layer of skin, a fall can be really dangerous for her and potentially fatal.
The family have moved to Hollywood in the hope that medication can bring Virsaviya’s blood pressure down sufficiently to operate.
Once her blood pressure has been lowered, Virsaviya would require several very complicated operations.
