A girl born with an incredibly rare condition that means her heart developed outside of her chest has said she will not let her condition hold her back.
Virsaviya Borun-Goncharova, 11, was born with an extremely rare condition called Pentalogy of Cantrell.
It caused her rib cage and abdominal muscles to not form properly during her mother’s pregnancy, 7 News reports.
The condition, which only affects about one in a million people, doesn’t cause her any pain in day-to-day life but does leave her heart exposed as it lies just below the surface of the skin.
While Virsaviya’s mother Dari, 31, was pregnant, she was told that her daughter was likely to die either during pregnancy or birth.
Despite the odds she survived and is now a thriving pre-teen girl.
Dari said: "Doctors told me that my daughter would die during pregnancy or during the birth.
“She truly is a miracle and I love the way she is. She is absolutely unique. She is one in a million."
Her brother, Ervin also loves to get close to his sister’s heart and to touch and rest his hands and face against it.
Dari said: “He thinks her heart is something magical and beautiful.
“He will just lie on Virsaviya so that he can feel her heart beating against his skin.
“It’s beautiful to watch.“
Dari originally moved with Virsaviya from their former home in Russia to Hollywood, Florida in the United States in 2015 with the hope that surgery to close a hole in her heart would allow Virsaviya to live a more normal life.
However, due to high blood pressure that affects the arteries in her lungs, this hasn’t been possible.
Virsaviya’s condition has led to her spending significant periods of time in hospital.
At the start of 2020, she suffered from sudden drops in her blood oxygen level which caused dizziness and breathlessness.
This ended up with Virsaviya being rushed to the emergency room, followed by a two-week stay in hospital and being monitored by doctors to ensure her oxygen levels stabilised.
Despite the challenges Virsaviya leads as normal a life as possible and says she loves playing with her friends, but has to be careful as a bump to her chest could be fatal.
She also needs to use an oxygen concentrator when she is physically active to maintain her oxygen saturation.
Dari said: “It’s not easy for Virsaviya to live with her heart on the outside of her chest because it’s really exposed and fragile, since it is just below the surface of the skin.
“At times it can cause both myself and Virsaviya anxiety to know just how vulnerable she is.”
While Virsaviya knows her condition poses significant risks, she isn’t letting it hold her back.
She said: “Sometimes it can be difficult when my oxygen levels are low and I feel lightheaded and dizzy.
“But I love staying active and singing and dancing with my friends.
"I love staying active and singing and dancing with my friends.’
“This past year has been boring because we haven’t been able to go anywhere or do anything but spending time with my brother has been nice.
“I get a lot of messages from fans on my Instagram telling me that I’m inspirational which is really kind.
“My heart is different, but it makes me completely unique and I love that.”
