6-Year-Old Girl Born with Heart Outside of Her Chest Continues to Defy Odds

girlwithoutsideheart
Meet Virsaviya Borun, a 6-year-old girl who was born with her heart outside of her chest.

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The young girl, who loves dancing and drawing, now needs help paying for a life-saving surgery – and a community of supporters have come together to help.

Virsayiva suffers from Pentalogy of Cantrell, a rare congenital condition (affecting less than one in a million births) that has also caused her intestines to protrude from her stomach. She lacks a diaphragm or abdominal muscles.

“My heart is right here,” she told NBC Miami, pointing to her chest. “It’s outside of my chest and I really love my mom, she’s always touching my heart because she likes it.”

Her mother, Dari Borun, moved to the United States with her daughter from their native Russia in search of better medical treatment. She found a doctor in Boston who said they were willing to help, but they recommend Virsayiva wait at least two years to have the procedure due to concerns over her high blood pressure.

The single mom is now struggling to make ends meet while they await surgery.

Since the story first aired on NBC, Dari, who now lives in Florida with Virsaviya, has raised over $74,000 dollars through the crowdfunding site,YouCaring.

“I don’t have a family here. It’s just me and Virsaviya, but now I feel like I have a family because a lot of people just caring about us. They love us. They want to help,” Borun said, adding that she hopes the funds raised can cover emergency medical expenses until Virsayiva’s blood pressure is low enough to go through with the surgery.

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“I don’t have a family here. It’s just me and Virsaviya, but now I feel like I have a family because a lot of people just caring about us. They love us. They want to help,” Borun said, adding that she hopes the funds raised can cover emergency medical expenses until Virsayiva’s blood pressure is low enough to go through with the surgery.

 

The two moved to Florida for the warmer weather, which is essential to Virsaviya’s well-being.

“She can’t be in cold anymore. And when we were in Boston, they said the same,” she said. “It was really cold and she got sick there too, but when she came here she feel better.”

While waiting for a plan of attack from her doctors, the two are staying positive.

“Mom always told me that she loves my heart and I really like it,” Virsaviya said.

 

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