One girl who was born with an incredibly rare disease, which means her heart developed outside of her breast, said that her disease did not hold her back.
Virsaviya Borun-Goncharova, 11, was born with an extremely rare disease called the Pentalogy of Cantrell.
It resulted in her rib cage and abdominal muscles not forming properly during her mother’s pregnancy. 7 news reports.
The disease, which affects only about one in a million people, causes her no pain in her daily life, but it leaves her heart free because it is just below the surface of the skin.
While Virsaviya’s mother, Dari, 31, was pregnant, she was told that her daughter would likely die either during pregnancy or during childbirth.
Despite all the odds, she survived and is now a thriving teenage girl.
Dari said, “Doctors told me that my daughter would die during pregnancy or childbirth.
“She really is a miracle and I love what she is. She is absolutely unique. She is one in a million. “
Her brother Ervin also loves to get close to his sister’s heart and touch his hands and face on it and rest.
Dari said, “He thinks that your heart is something magical and beautiful.
“He will just lie on Virsaviya so he can feel her heart beating against his skin.
“It is nice to see.”
Dari originally moved with Virsaviya from their previous home in Russia to Hollywood, Florida, USA in 2015 in the hopes that surgery to close a hole in her heart would allow Virsaviya a more normal life.
However, this was not possible because of the high blood pressure affecting the arteries in her lungs.
Virsaviya’s condition has resulted in her being in the hospital for long periods of time.
In early 2020, she suffered from sudden drops in blood oxygen that caused dizziness and shortness of breath.
This resulted in Virsaviya being taken to the emergency room, followed by a two week hospital stay and surveillance by doctors to make sure her oxygen levels stabilized.
Despite the challenges, Virsaviya leads the most normal life possible, saying that she loves to play with her friends but needs to be careful as a lump on her chest can be fatal.
She must also use an oxygen concentrator when she is physically active to maintain her oxygen saturation.
Dari said, “It is not easy for Virsaviya to live with her heart on the outside of her chest because it is really exposed and fragile as it is just under the surface of the skin.
“Sometimes it can worry both me and Virsaviya to know how vulnerable she is.”
Although Virsaviya knows that her condition carries significant risks, it does not hold her back.
She said, “Sometimes it can be difficult when my oxygen levels are low and I feel lightheaded and dizzy.
“But I love to stay active and sing and dance with my friends.
“I love to stay active and sing and dance with my friends.”
“Last year has been boring with nowhere to go or anything, but spending time with my brother was nice.
“I get a lot of messages from fans on my Instagram telling me that I’m inspiring, which is really nice.
“My heart is different, but it makes me completely unique and I love that.”