Virsaviya ‘Bathsheba’ Borun-Goncharova has been battling against and beating the odds since before she was born.
Her mother, Dari, was told her child wouldn’t survive the pregnancy. Thankfully she was told wrong, and six years later Virsaviya’s heart is till beating, albeit outside of her chest.
Originally from Russia but now living with her mum in the US, she suffers from a rare condition known as Pentalogy of Cantrell, a congenital disorder which effects less than one in a million births.
The condition causes babies to be born with vital organs outside their bodies. The severity and symptoms of the disorder vary greatly, but in Virsaviya’s case it means that both her heart and intestines are outside of her chest and abdomen. Her heart can be seen beating, protected only by a thin layer of skin.
Considering that the heart isn’t protected by her ribcage, the condition can be fatal as a small bump or fall could cause major damage.
Earlier this year they found a doctor at Boston’s Children’s Hospital who was willing to the rare ailment. But, although she urgently requires surgery to correct the issue, Virsaviya cannot be operated on for another two years due to her high blood pressure.
Virsaviya is a brave girl. It’s rare for a child with her condition to live until the age of six. She has a crowdfunding page set up to help fund the treatment.