…Hoping for operation
A seven-year-old girl who was born with her heart outside her chest is heading to the US in hope of having a life changing operation.
Virsaviya Borun-Goncharova suffers from thoraco-abdominal syndrome or Pantalogy of Cantrell, which affects just five in a million people.
Her parents were told when she was born to prepare for the worst but the Russian has defied the odds.
Now she is moving to the US where she will take medication to lower her blood pressure that, if successful, will allow to have a life changing operation.
Speaking to the BBC, she said: ‘This is my heart. I’m the only one that has this.
‘And I just walk around, I jump, I fly, I run. Well I am not supposed to run but I love running.’
When she was born in Russia, doctors told her mother, Dari Borun, that the baby wouldn’t survive.
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.’
The family previously moved to the US for surgery, but doctors said her blood pressure was too high to operate.
Several years on, they are returning, this time to Hollywood, in the hope that medications can bring her blood pressure down, and she can finally have her operation.
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.’
Culled from metro.o.uk