Meet one of God’s miracles children, 11-year old Virsaviya Borun-Goncharova, born with an extremely rare condition called Pentalogy of Cantrell that affects one in a million newborns annually.
The condition usually causes the rib cage along with the infant’s abdominal muscles not to form properly during pregnancy. This causes the heart muscle to develop outside the chest cavity, protected with nothing more than a thin layer of skin minus a chest bone.
However, that hasn’t stopped little Virsaviya from living life to its fullest despite the incredible daily challenges that confront both mother and daughter.
Virsaviya Borun-Goncharova is one in five million. Born in Russia, the doctors were afraid she would not survive with a thoracoabdominal syndrome. She has since then moved to America where she received medication to ensure her a safe operation. #Bio110Sum18 @NutmegSomething pic.twitter.com/BW0swDcdzX— Kateri Baranowski (@KateriBaranows1) June 26, 2018
When Virsaviya’s mother Dari was pregnant she received the devastating news that her daughter had this extremely rare condition and would in all probability not survive the birth. Dari prayed for a miracle and despite the infinitesimal odds of survival God answered her prayers. Virsaviya not only survived, but is inspiring others with her unconditional faith.
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Dari said, “Doctors told me that my daughter would die during pregnancy or during the birth. She truly is a miracle and I love the way she is. She is absolutely unique. She is one in a million.“
Virsaviya credits her mother’s devotion and God’s divine purpose for her survival. “I know why I have my heart outside, because Jesus wants to show that he can make special things like me.”
Her brother, Ervin, also loves to get close to his sister’s heart and to touch and rest his hands and face against it.
The journey for both mother and daughter hasn’t always been easy. Born in Russia, the duo found it difficult to find qualified specialists to treat Virsaviya’s rare condition.
The single mom sold everything she had, packed up her belongings, and bid farewell to her homeland headed for America. There she sought out the best medical services available for her special girl. She eventually found qualified doctors at Boston’s Children’s Hospital who assured Dari they could provide the care she needed.
Dari said, “It’s not easy for Virsaviya to live with her heart on the outside of her chest because it’s really exposed and fragile, since it is just below the surface of the skin.”
Adding, “At times it can cause both myself and Virsaviya anxiety to know just how vulnerable she is.”
While Virsaviya realizes that her condition can become risky for an active 11-year old, she isn’t holding back her desire to be a normal kid. She stated, “Sometimes it can be difficult when my oxygen levels are low and I feel lightheaded and dizzy. But I love staying active and singing and dancing with my friends.”
Doctors have assured both mother and daughter they can perform the surgery required to ensure that 11-year old Virsaviya Borun-Goncharova grows into a beautiful young woman. However, before that happens there are still a few hurdles she needs to overcome. One of those is Virsaviya’s high blood pressure readings which is a byproduct of her condition, affecting the arteries in her lungs.
There is also the small matter of huge medical costs which will undoubtedly run into the hundreds of thousands of dollars. This has spearheaded a fundraising drive along with the creation of an internet donation page where individuals can contribute.
“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,” Dari said.
Recently, Virsaviya learned that another miracle girl has the same condition. The two have joined forces and are sharing their real-life inspirational journey with others.