A girl born with her heart beating outside of her chest has said she will not let her rare condition hold her back.
11-year-old Virsaviya Borun-Goncharova was born with Pentalogy of Cantrell.
The condition caused her abdominal muscles and rib cage to not form properly during her mother’s pregnancy.
While her mother was still pregnant, she was told that her child would not survive. But Virsaviya continued to beat the odds and she is now eleven years old.
“Doctors told me that my daughter would die during pregnancy or during the birth,” Dari, 31, shared.
“She truly is a miracle and I love the way she is. She is absolutely unique. She is one in a million.”
Virsaviya’s brother, Ervin, loves to see his sister’s heart and he even rests his face against it. “He thinks her heart is something magical and beautiful,” Dari added.
“He will just lie on Virsaviya so that he can feel her heart beating against his skin.
“It’s beautiful to watch.”
In 2020, Virsaviya’s blood oxygen levels suddenly dropped, making her suffer from breathlessness and dizziness. She had to stay in the hospital for two weeks to make sure her oxygen levels stabilized.
The strong-willed girl loves playing with her friends but she has to be extra careful as a bump to her chest could be very dangerous.
In addition, she needs an oxygen concentrator to keep her oxygen levels normal.
“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,” Dari said. “At times it can cause both myself and Virsaviya anxiety to know just how vulnerable she is.”
Virsaviya knows her rare condition poses significant risks but she is not letting it hold her back.
“Sometimes it can be difficult when my oxygen levels are low and I feel lightheaded and dizzy,” she expressed. “But I love staying active and singing and dancing with my friends.”
She added: “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.”
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