Virsaviya “Bathsheba” Borun-Goncharova has been beating the odds her entire life after she was born with her heart and other organs outside her chest cavity
Virsaviya is just like any other seven-year-old-girl – she likes dancing, drawing and ponies.
But as this incredible footage shows, the brave girl was born with an extraordinary condition which means her heart is outside her chest.
The little girl suffers from thoraco-abdominal syndrome or Pantalogy of Cantrell – a condition that occurs in less than 1 in a million births.
Speaking to the BBC, she said: “This is my heart. I’m the only one that has this.”
Virsaviya’s heart can be visibly seen beating underneath her rib cage with only a thin layer of skin to protect it.
She adds: “When I’m getting dressed, I put soft clothes on to not hurt my heart.
“I walk around, I jump, I fly, I run, I’m not supposed to run but I love running.”
When Virsaviya was born in Russia, doctors warned mum Dari Borun to prepare for the worst.
( Image: BBC)
Â( Image: BBC)
ÂShe 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.”
Dari moved her from Russia to the US in the hope she could have surgery but she was told that Virsaviya wasn’t strong enough because of problems with her blood pressure.
( Image: BBC)
ÂShe added: “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.
“It’s not easy for Virsaviya to live with her heart on the outside because it’s really fragile. She has to be careful as of course she can fall and it can be really dangerous – she can die from that.”
Now the family have moved to Hollywood in the hope that medications can bring her blood pressure down enough to operate.
( Image: Instagram/dariborun)
Â( Image: Instagram/dariborun)
“I like to draw Jesus, ponies and angels,” said Virsaviya.
“I don’t go to the school and I don’t go to the ballet but I want to do it at home.
“My heart is right here.
( Image: Instagram/dariborun)
“It’s outside of my chest and I really love my mom , she’s always touching my heart because she likes it.”
Virsaviya’s heart, about the size of a fist, has always been outside of her chest since birth.
She is expected to require several very complicated operations .
The cheerful and talented child who loves dolphins, dogs, horses and Beyonce has had her entire life documented on her mother’s instagram account.
It shows hundreds of photos of the child.
Source: https://www.mirror.co.uk/news/world-news/meet-incredible-7-year-old-9837352