心脏长在身体外面的俄罗斯女孩坚强面对生活

Virsaviya, a native of Russia who recently moved toSouth Florida with her mother, suffers from multiplebirth defects caused by Pentalogy of Cantrell - a rarecongenital condition that occurs in estimated 5.5 inone million live births.

一位名叫Virsaviya的俄罗斯姑娘最近和母亲搬到了南佛罗里达州，她因患坎特雷尔五联症导致天生畸形。这是一种非常罕见的先天性疾病，据估计发病率为一百万分之5.5.

Virsaviya's heart, which is about the size of a fist,could be seen beating against her abdominal area,protected only by a thin layer of skin. Her intestinesare also outside her body and she has no abdominal muscles or a diaphragm.

Virsaviya的心脏有拳头大小，可以看到只有一层薄薄的皮肤保护，在腹腔外跳动着。她的肠子也在体外，没有腹肌，也没有隔膜。

'When I was pregnant, the doctor said she will not survive, that she is going to die,' the girl'smother, Dari Borun, told NBC Miami.

她的妈妈Dari Borun告诉迈阿密NBC：“在我怀孕时，医生就说她很难活下来，可能马上就会死去。”

Six years later, Virsaviya, who also goes by the biblical name Bathsheba, is a bright and livelygirl who enjoys drawing ponies, attends art classes and loves dancing to Beyonce's songs.

6年后，Virsaviya还活着，她还有一个从圣经里来的名字Bathsheba。她是一个开朗活泼的小姑娘，喜欢画小马、上艺术课，以及随着美国歌手碧昂丝的歌曲起舞。

In early 2015, Ms Borun, who has been raising Virsaviya on her own, found a doctor at Boston'sChildren's Hospital willing to treat her rare ailment. Pentalogy of Cantrell often requiressurgery, depending on the severity of the patient's defects, and could be fatal if leftuntreated.

早在2015年初，独自抚养Virsaviya长大的妈妈Borun就曾找到波士顿儿童医院的一名医生，期待能帮忙治疗小姑娘罕见的病症。坎特雷尔五联症通常需要做外科手术，取决于患者症状的严重程度，如果放任不管，随时都可能死亡。

But the medical team in Boston said Virsaviya cannot undergo surgery at the moment becauseshe has high blood pressure in her pulmonary aorta. The girl will be evaluated again in twoyears to determine if it would be safe for her to undergo an operation.

然而，波士顿医院的专家团队当时表示，由于Virsaviya的肺主动脉有高血压，当前身体状况还不允许进行手术。她将继续被观察两年，以决定其身体状况是否能承受手术。

Ms Borun has appealed to the public for help, asking for donations to cover her daughter'smedical bills and basic living expenses, saying she has very limited means, being a singlemother of a special-needs child with no other family in the US.

她的妈妈向公众寻求帮助，希望筹得捐款来支付女儿的医院费和基本生活开支。她表示，自己生活非常拮据，是一个需要照顾有特殊需要的孩子的单身妈妈，在美国也没有亲朋好友。

In sunny Florida, her mother says the 6-year-old's heart feels warm and she does not get sick asoften as before.

在阳光和煦的佛罗里达，Virsaviya的妈妈表示，这颗6岁小心脏很温暖，Virsaviya也不像过去那样总是生病了。

While awaiting treatment, Virsaviya fills her days with art, music and dance. The mother anddaughter also rely on their faith to keep them strong in the face of adversity.

在等待治疗的日子里，Virsaviya每天的生活被绘画、音乐和舞蹈所充实。这对母女靠着坚定的信念，坚强面对每天如履薄冰的日子。

'I know why I have heart outside,' says the 6-year-old knowingly. 'Because Jesus want sic toshow he can make special things like me.'

这位6岁的小姑娘机智地表示：“我知道为什么我的心长在外面，因为耶稣希望让大家知道，他能创造出像我这样特别的杰作!”

The family have launched a fundraising page on Youcaring.com titled Bathsheba's Heart. So farthey have raised $11,790 with a goal of $20,000.

这个家庭已经在Youcaring.com网站上发起了名为“Bathsheba”的捐款，目前他们已经筹集了11790美元，而他们的目标是20000美元。