She even told her local NBC station, “I know why I have [my] heart outside, because Jesus wanted to show that he can make special things like me”.
Advertisement
Although her outlook is positive, the little girl – originally from Russian Federation – urgently needs help, which is why she and her mother recently moved to America.
Symptoms and severity of the disorder vary greatly, but in Virsaviya’s case it means that both her heart and intestines are outside of her chest and abdomen.
Boron has also shared photos of Virsaviya on Instagram which reveal her heart, the size of a fist that, beating beneath a thin layer of skin.
Doctors told Dari Borun her daughter wouldn’t live long after birth, but Virsaviya Borun-Goncharova has defied the odds growing up into a little girl who likes to draw and dance.
Infants with Pentalogy of Cantrell can have a wide variety of congenital heart defects including a “hole in the heart” and abnormal location of the heart on the right side of chest instead of the left, among others.
Despite the challenges, Virsaviya said it’s the heart that keeps her and her mother going.
Now they’ve found a surgeon in Boston who has the ability to treat Virsaviya.
Dari, who is a single mum, moved with her daughter to the U.S. for treatment.
“It’s gonna be expensive for sure and I tried to work with social worker and she said we don’t have opportunity to apply for insurance”, she said.
The pair recently traveled to Boston but the Children’s Hospital could not operate because her aortic blood pressure was too high, she claims.
The family have launched a fundraising page on Youcaring.com titled Bathsheba’s Heart. “They love us. They want to help”, Dari said.
Now the family have moved to Hollywood in the hope that medications can bring her blood pressure down enough to operate. “So if it goes down, if she will feel better, they’re going to check her in two years”, Dari explained. She is facing a threat to her life.
“She can’t be in cold anymore”.
Advertisement
Though funds are being raised to help the girl receive treatment, she is now unable to undergo surgery.
