Fourteen years ago, when this girl was born, it was a big deal. A young woman named Dari Borun gave birth to a girl whose heart is right under the skin instead of in the chest cavity. This disease is called “Pentalogy of Cantrell,” and it affects one baby in every million.
Virsaviya’s case is a true wonder.
Due to a rare disease, Virsaviya was born without a rib cage or abdominal muscles. This made it hard for her heart to be protected. Doctors told her mother, Dari, that it was unlikely that her pregnant daughter would live, and that she might not even make it through pregnancy or birth.
Even though the outlook was bad, Dari went ahead with the birth because she loved her future child so much. Today, this amazing young girl loves her life and does things that are normal for her age. “She is a miracle for sure, and I love her just the way she is. She is like no one else. “Virsaviya is one in a million,” says her mother.
Her mother is doing everything she can to get the word out about Virsaviya’s illness.
Dari Barun, Virsaviya’s mother, didn’t worry about her daughter’s health. Instead, she posted pictures of her daughter without a shirt on Instagram. In different poses and settings, these pictures showed Virsaviya’s open heart. Dari’s strength probably came from her lively daughter, who loves to dance, draw, ride ponies, and listen to Beyoncé. She can’t run as much as she’d like, but she still loves the exercise. Virsaviya always wears soft clothes to protect her heart.
“I love my daughter just the way she is,” Dari says. God made her that way, but I don’t want this to happen to other children if it can be stopped. I support the work that NHLBI experts are doing to learn more about this disease and maybe find a way to treat it.
Only one person in a million has this problem.
Pentalogy of Cantrell is the name of Virsaviya’s medical disease. It is so rare that only one in a million babies born alive have it. Surprisingly, her heart problem doesn’t hurt her or slow her down in any way.
Even though she can do normal things, Virsaviya must be very careful not to hurt her chest. If she does, her fully open heart beneath the surface of her skin could be in danger. She wears a chest covering every day to protect her most important part from harm.
Even though there are risks, Virsaviya leads a busy life.
The mother says, “It’s hard for Virsaviya to live with her heart on the outside of her chest. Since it’s just under the skin, it’s very exposed and weak. Knowing how fragile she is can sometimes make me and Virsaviya nervous.”
Even though she knows that her situation comes with a lot of risks, the girl refuses to let it stop her. She says, “It can be hard when I don’t have enough oxygen and feel lightheaded and dizzy.” But I love being busy and singing and dancing with my friends.”
Fans of Virsaviya on Instagram still give her a lot of support and say that her story is a true example. She says, “My heart is different, but that’s what makes me special, and I love that.”
It’s great to see how parents support their kids and see their differences as part of what makes them special. For example, when another girl named Luna was born, she had a big birthmark called a nevus. Her mother did everything she could to help her feel pretty and turned her birthmark into something she was proud of.