Virsaviya Borun’s favorite hobbies are drawing, singing, and dancing, and she loves grooving to Beyoncé. For anyone who has seen or met her, she may appear like a normal 6-year-old kid. Except she isn’t. Virsaviya suffers from Pentalogy of Cantrell, a rare congenital disorder which affects less than one in a million births. In other words, Virsaviya wears her heart on her chest.
And yet, not much seems to faze the young Virsaviya, who is affectionately called Bathsheba by her mother and her friends. Though her heart, about the size of a fist, is outside of her chest and has been that way since birth, Virsaviya has never been down about it. Speaking to NBC about her strange condition, she said her mother Dari Borun, who moved to the United States with her daughter from native Russia in hopes of better treatment, is her strongest support system.
“My heart is right here. It’s outside of my chest and I really love my mom, she’s always touching my heart because she likes it.”
According to Metro, Virsaviya and her mother – who are currently living in Florida – originally moved to Boston after a doctor at Boston’s Children’s Hospital said they were willing to help. However, on arriving in the country, doctors informed Dari to her utter disappointment that Virsaviya can’t undergo surgery for at least two years due to high blood pressure.
“When she started to cry, I saw how her heart and her intestine go out,” Virsaviya’s mother said during an interview. “Every day, she comes over and asks me, ‘Can you touch my heart?’ ”
A single mom, Dari could hardly afford to earn the minimum to keep the two of them going. A social worker who worked with her told Dari that she could not apply for insurance for Virsaviya’s treatment since they had moved to the country only recently, according to International Business Times. Despite of the overwhelming odds stacked against her, however, Virsaviya’s mother was unwilling to concede defeat. After consulting a few friends, she set up a crowdfunding page on YouCaring, hoping people would come out to help Virsaviya.
Days after the page was set up, Virsaviya started receiving donations for better diagnosis and treatment of her ailment. As of now, people have donated almost $34,000 towards Virsaviya’s treatment, and it seems the $100,000 mark Borun had set will be reached with a few days to spare. Dari Borun is obviously thrilled with the love her daughter is receiving.
“I don’t have a family here. It’s just me and Virsaviya, but now I feel like I have a family because a lot of people just caring about us. They love us. They want to help.”
Dari said some of these funds will be used to cover emergency medical expenses, according to reports, and the rest will be used up when Virsaviya finally goes under the knife in two years’ time.
One of the other reasons that Dari Borun moved to Florida with her daughter is the weather. Doctors in Russia told her that Virsaviya could not survive the cold and it was imperative that she moved to warmer climates if the well-being of her daughter was her priority.
“She can’t be in cold anymore. And when we were in Boston, they said the same. It was really cold and she got sick there too, but when she came here she feel better.”
As of now, Virsaviya is battling with her ailment in the strongest possible manner. And if the recent outpouring of affection towards her is anything to go by, it won’t be long before Virsaviya Borun has her heart in the right place.
[Photo via Dari Borun / Instagram]