Virsaviya Borun-Goncharova: The girl born with her heart on the outside of her chest

A six-year-old girl has beaten the odds by making it this far in life after doctors told her mother that she would not survive at birth because of the rare heart defect she has. Virsaviya "Bathsheba'"Borun-Goncharova, originally from Russia, suffers from Pentalogy of Cantrel – a rare congenital disorder with varying symptoms, but for Virsaviya, her heart and intestines are outside of her chest and abdomen.

Virsaviya's heart is protected by just a thin layer of skin and it can be seen beating. It effects fewer than one in a million births, and such is the rarity of the condition that she and her mother, Dari, had to move to the USA in the hope of getting life-saving surgery.

Several hospitals around the world have already turned down the opportunity to operate on Virsaviya due to the complications it involved. When the pair originally left Russia, they headed for Boston as the Children's Hospital said that it would help.

However, after closer examination of the child, it was decided that it wouldn't be able to perform surgery for two years because of high blood pressure. The family now reside in Hollywood so they have access to medications that will help lower her blood pressure to the point where it is safer to operate.

A crowdfunding page has been set up by the mother to help with costly medical costs in the US. It reads: "When Virsaviya gets sick, she starts choking and has very bad pain in her bladder and kidneys. This has already happened several times, and Virsaviya and her mother do have not insurance to pay for the treatment when it happens.

"There is hope that Virsaviya can get her surgery if she continues take her medicines and her blood pressure improves, but both the surgery and her on-going treatments are well beyond the means of her family." At the time of writing, the YouCaring page has sourced $26,990 (£17,500) of a hopeful $100,000 with 61 days left.