Virsavia Borun is 14 years old, even though doctors didn’t give her a chance to live for even a single day. She was born with her heart outside her chest, a condition that occurs in 1 person per million. Doctors worry that Virsavia won’t live past 30, but her mother believes that her daughter will beat the odds once again.
Virsaviya’s case is a true miracle.
Young Virsaviya has faced numerous challenges due to a rare condition that left her heart unprotected by the absence of a rib cage and abdominal muscles. During her pregnancy, doctors had warned her mother, Dari, that the unborn daughter would unlikely survive and might not even make it through pregnancy or birth.
Despite the bleak prognosis, Dari’s unwavering love for her unborn child compelled her to proceed with the birth. Today, this remarkable young girl revels in her life, engaging in typical activities befitting her age. “She truly is a miracle and I love the way she is. She is absolutely unique. She is one in a million,” Virsaviya’s mother says.
Her mother is doing everything to raise awareness of Virsaviya’s condition.
Instead of succumbing to worry about Virsaviya’s condition, her mother, Dari Barun, proudly shared bare-chested pictures of her daughter on Instagram. These images showcased Virsaviya’s exposed heart in various poses and settings. Dari likely drew her strength from her vibrant little girl, who adores dancing, drawing, riding ponies, and listening to Beyoncé. Although running is restricted for her, she cherishes the activity nonetheless. To protect her heart, Virsaviya always wears soft clothing.
Dari says, “I love my daughter the way she is. That’s the way God made her, but I don’t want this condition to happen to other kids if it can be prevented. I support the work of NHLBI researchers to continue to shed light on this condition and perhaps find a way to treat it.”
“The doctors told me that she will not make it even to one day, but now she’s fourteen,” told Virsaviya’s mother. Borun has received a prognosis from doctors suggesting she won’t live beyond 30. However, her mother remains optimistic, believing that since her daughter defied the odds once, she can do it again.
The girl herself considers her life not a miracle, but the result of her mother’s love and support. “It’s less of a miracle and more of my mother’s love,” she says. “My mom believed, I don’t think it’s anything but that.”
This condition affects only one in a million.
Virsaviya’s medical condition is known as Pentalogy of Cantrell and affects only one in a million live births. Remarkably, her heart condition does not cause her any pain or hinder her daily activities.
Despite her ability to engage in regular pursuits, Virsaviya must exercise extreme caution to avoid injuring her chest, as this could pose a significant risk to her fully exposed heart beneath the surface of her skin. To safeguard her vital organ from harm, she diligently wears a chest covering for protection.
Despite potential risks, Virsaviya lives an active life.
The mother says, “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.”
Despite being aware of the substantial risks associated with her condition, the girl refuses to be hindered by it. She says, “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.”
Till now Virsaviya gets a lot of support from her fans on Instagram who call her story a true inspiration. She adds, “My heart is different, but it makes me completely unique, and I love that.”
There are only 250 documented cases of pentalogy of Cantrell in the world. Borun doesn’t let the rarity of her condition bother her. But Virsavia and her family aren’t giving up and getting sad, they are staying optimistic.
“You shouldn’t care what other people say about you or think about you, what you think of yourself is the most important,” Virsaviya says.
We wish Virsaviya health and resilience. Unusual features occur in many people, and the main thing is to learn to accept them, just as the hairiest girl in the world has done.