Girl with a rare condition awaits a life-saving operation

Virsaviya Borun is in many ways a normal seven-year-old girl. She loves drawing, ballet and going to school. One wouldn't know it to see her in a normal setting, but she suffers from an extremely rare condition with a rather extreme set of consequences.

She suffers from Pentalogy of Cantrell, which includes ectopia cordis, a condition occuring in only one in eight million births in which the heart grows outside the body. 

Patients with this disease often have other deformities with their diaphragm, abdomen wall, pericardium  and/or the sternum. For Virsaviya, she is missing a piece of her sternum and has no diaphragm at all.

As a result, you can see her heart beating under the thin layer of skin on her stomach. Her mother often lays her hand on her daughter's stomach just to feel her heart beat. When Virsaviya coughs, you don't only see her heartbeat but also the bulging intestines under her abdomen.

Virsaviya and her mother Dari originally come from Russia. Doctors there were pessimistic about her chances of survival, but she has thus far survived the odds remarkably. Hoping to increase the chances of being able to treat her condition through life-saving surgery, Dari and Virsaviya came to the United States two years ago.

Dari says that a children's hospital in Boston is prepared to perform the surgery, but that it has been delayed for at least two years due to the girl's high blood pressure. Meanwhile, mother and daughter are living in south Florida, where both are learning English and where Virsviya attends school.

After initially raising over $100,000 in Russia to come to the United States, Dari has subsequently raised over $70,000 through the crowd-funding site to pay for their living costs and for Virsviya's eventual operation.

Virsaviya — who Dari also affectionately refers to as Bathsheba — seems to be thriving in the Florida sunshine.

Her courageous story has fascinated people around the world and over 43,000 people follow her mother Dari's Instagram account to keep up with her progress. How fortunate that so many people have made it possible for her to have made the journey thus far. The pair's many fans and supporters are eager — as are Virsviya and Dari, no doubt — for the day that her operation can finally become a reality. 


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