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When a little girl’s rib cage and abdominal muscles did not form properly in the utero, doctors feared she may not survive to full term or through birth. However, the now-pre-teen who has her heart developed out of her chest has defied her prognosis.
Now 11, Virsaviya Borun-Goncharova from Florida is thriving, and is quite literally “one in a million.”
The extremely rare condition that Virsaviya suffers from is called Pentalogy of Cantrell. While not chronically painful, the condition is not without risks.
According to the National Organization for Rare Disorders (NORD), Pentalogy of Cantrell affects 5.5 in 1 million live births, and 64 percent of babies born with the condition die within days of being born.
“Doctors told me that my daughter would die during pregnancy or during the birth,” Virsaviya’s mother, Dari Borun, 31, said according to 7 News. “She truly is a miracle and I love the way she is,” she continued. “She is absolutely unique.”
Mom of two Dari relocated from Russia to Hollywood, Florida, in 2015, hoping that surgery could repair her daughter’s secondary condition, conoventricular VSD, otherwise known as a hole in the heart. However, high blood pressure made the surgery impossible; yet, the young girl is determined not to let her heart hold her back.
“I love staying active and singing and dancing with my friends … My heart is different, but it makes me completely unique and I love that,” she shared. Nonetheless, Virsaviya has to be careful and often wears a protective covering, as a mere bump to the chest could prove fatal.
“[Virsaviya’s heart is] really exposed and fragile, since it is just below the surface of the skin,” Dari explained. “At times it can cause both myself and Virsaviya anxiety to know just how vulnerable she is.”
The rare condition has prompted several long hospitalizations.
After being hit by accident while at school in December 2017, Virsaviya was rushed to the hospital. She was “vomiting,” said Dari, “complaining that she feel [sic] pain in her heart, belly and head, and that she feel [sic] cold,” the Mirror reported.
At the beginning of 2020, Virsaviya experienced dizziness and breathlessness as a result of sudden drops in her blood oxygen level. She was stabilized in hospital, and now sometimes uses a portable oxygen concentrator when active to maintain optimal oxygen saturation.
“Sometimes it can be difficult when my oxygen levels are low and I feel lightheaded and dizzy,” she admitted. “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.”
Virsaviya’s brother, Ervin, is perhaps her biggest fan. Far from shying away from his sister’s visible difference, the toddler loves to get close to her heart, touch it, and even rest his face against it.
“He thinks her heart is something magical and beautiful,” Dari explained. “He will just lie on Virsaviya so that he can feel her heart beating against his skin. It’s beautiful to watch.”
As her journey continues, Virsaviya is bolstered by messages of support on her Instagram page where she has amassed over 28,000 followers. Besides her determination to live a full life, she is happy that her story is also helping others.
As early as 2017, Virsaviya felt that her unique heart was something to love about herself. “I know why I have a heart outside,” she told Daily Mail. “Because Jesus want [sic] to show he can make special things like me.”