The girl whose heart pushes out of her chest every time she giggles

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Brave Virsaviya Borun was born with an extraordinary condition that means her heart is growing on her chest.

Virsaviya was born with a rare condition where her heart is outside her chest. Just a thin layer of skin protects her heart from the outside world.

She suffers from Pantalogy of Cantrell, or thoraco-abdominal syndrome, an ultra-rare condition that affects just five in a million people.

She told the BBC: “This is my heart. I’m the only one that has this. When I’m getting dressed, I put soft clothes on to not hurt my heart”.

“And I just walk around, I jump, I fly, I run.”Well I am not supposed to run but I love running.”

The condition affects just five out of one million people. When she was born in Russia, medics warned her mother Dari Borun to prepare for the worst.

Little Virsaviya’s heart can visibly be seen beating under the thin layer of skin holding it in her body.

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.

“Virsaviya is alive and she can breathe and she can live.”

The worried mum moved her family to the US in the hope Virsaviya could have survive. But, devastatingly, she was told her little girl wasn’t strong enough to survive the procedure because of her blood pressure. She added: “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.”

Pictures of Dari’s Instagram account show a happy, vibrant little girl who loves to play and dance.

 

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