Virsaviya was born with an extraordinary condition which means her heart is outside her chest. The seven-year-old girl suffers from thoraco-abdominal syndrome or Pantalogy of Cantrell – a condition that occurs in less than 1 in a million births. Virsaviya’s heart can be visibly seen beating underneath her rib cage with only a thin layer of skin to protect it.
“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. I walk around, I jump, I fly, I run, I’m not supposed to run but I love running.”
Her mother, 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.
“It’s not easy for Virsaviya to live with her heart on the outside because it’s really weak. She has to be careful as of course she can fall and it can be really dangerous – she can die from that.”
The family has moved to Hollywood in hope that medication can bring her blood pressure down enough to operate.
Virsaviya’s heart, about the size of a fist, has always been outside of her chest since birth.