ONE IN A MILLION ‘MY DAUGHTER'S HEART IS INSIDE OUT!'

MUM DARI SAYS HER GIRL VIRSAVIYA IS A MIRACLE

- Martin Ruffell

At first glance, 11-year-old Virsaviya BorunGoncharova looks just like any other energetic pre-teen. She loves to sing and play with her little brother, Ervin. But behind her love of life and vibrant smile, Virsaviya is living with a rare condition that affects just one in a million.

Diagnosed at birth with an extremely rare disorder called Pentalogy of Cantrell, Virsaviya’s rib cage and abdominal muscles did not form properly when she was in the womb, which led to her heart developing at the surface of the skin outside of her chest.

Virsaviya was also found to suffer from a hole in her heart, which means she struggles when her oxygen levels drop and she gets light-headed and dizzy. She has to be incredibly careful to avoid any type of contact with her heart too, because even the slightest bump could prove fatal.

“Doctors told me that my daughter would die during pregnancy or during the birth because her heart would be too badly damaged,” says mum, Dari. “She truly is a miracle and I love the way she is. She is absolutely unique. She is one in a million.