DADADEL
A warrior girl, born fourteen years ago, caused quite a sensation. Dari Borun, a young mother, gave birth to a baby girl with her heart situated not within the chest cavity, but right beneath the skin—a condition known as Pentalogy of Cantrell, occurring in just 1 in 1 million newborns.
Virsaviya’s situation is nothing short of a miraculous marvel.
Young Virsaviya, born with a rare condition that left her heart unprotected by a rib cage and abdominal muscles, defied bleak predictions. Her mother, Dari, chose to proceed with the birth despite the grim prognosis.
Today, Virsaviya enjoys a fulfilling life, embracing age-appropriate activities with enthusiasm. “She truly is a miracle and I love the way she is. She is absolutely unique. She is one in a million,” says her mother.
Her mother is tirelessly raising awareness about her daughter’s condition.
Rather than succumbing to worry over Virsaviya’s condition, her mother, Dari Barun, boldly shared Instagram photos of her daughter bare-chested, showcasing her exposed heart in different poses and settings.
Dari likely drew strength from her vibrant daughter, who loves dancing, drawing, riding ponies, and listening to Beyoncé. While running is off-limits, she cherishes the activity, always donning soft clothing to protect her heart.
The mom 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.”
This condition occurs in only one out of a million cases, and this warrior girl is one of them.
Virsaviya’s condition, Pentalogy of Cantrell, is exceedingly rare (1 in a million live births). Astonishingly, it doesn’t cause her pain or disrupt her daily life. Despite her normal activities, she must protect her exposed heart beneath her skin with a chest covering to prevent potential harm.
She leads an active life, despite possible risks.
Her 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 her awareness of the significant risks, the girl remains undeterred by her condition. Virsaviya 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. My heart is different, but it makes me completely unique and I love that.”
The warrior girl continues to receive immense Instagram support, as her story inspires countless fans.
