心臟長在身體外面的俄羅斯女孩堅強面對生活

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的俄羅斯姑娘最近和母親搬到了南佛羅里達州，她因患坎特雷爾五聯(lián)癥導(dǎo)致天生畸形。這是一種非常罕見的先天性疾病，據(jù)估計發(fā)病率為一百萬分之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的心臟有拳頭大小，可以看到只有一層薄薄的皮膚保護，在腹腔外跳動著。她的腸子也在體外，沒有腹肌，也沒有隔膜。

'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.

她的媽媽Dari Borun告訴邁阿密NBC：“在我懷孕時，醫(yī)生就說她很難活下來，可能馬上就會死去。”

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還活著，她還有一個從圣經(jīng)里來的名字Bathsheba。她是一個開朗活潑的小姑娘，喜歡畫小馬、上藝術(shù)課，以及隨著美國歌手碧昂絲的歌曲起舞。

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，獨自撫養(yǎng)Virsaviya長大的媽媽Borun就曾找到波士頓兒童醫(yī)院的一名醫(yī)生，期待能幫忙治療小姑娘罕見的病癥?？蔡乩谞栁迓?lián)癥通常需要做外科手術(shù)，取決于患者癥狀的嚴(yán)重程度，如果放任不管，隨時都可能死亡。

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，波士頓醫(yī)院的專家團隊當(dāng)時表示，由于Virsaviya的肺主動脈有高血壓，當(dāng)前身體狀況還不允許進行手術(shù)。她將繼續(xù)被觀察兩年，以決定其身體狀況是否能承受手術(shù)。

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.

她的媽媽向公眾尋求幫助，希望籌得捐款來支付女兒的醫(yī)院費和基本生活開支。她表示，自己生活非常拮據(jù)，是一個需要照顧有特殊需要的孩子的單身媽媽，在美國也沒有親朋好友。

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

在陽光和煦的佛羅里達，Virsaviya的媽媽表示，這顆6歲小心臟很溫暖，Virsaviya也不像過去那樣總是生病了。

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.

在等待治療的日子里，Virsaviya每天的生活被繪畫、音樂和舞蹈所充實。這對母女靠著堅定的信念，堅強面對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.'

這位6歲的小姑娘機智地表示：“我知道為什么我的心長在外面，因為耶穌希望讓大家知道，他能創(chuàng)造出像我這樣特別的杰作!”

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.

這個家庭已經(jīng)在Youcaring.com網(wǎng)站上發(fā)起了名為“Bathsheba”的捐款，目前他們已經(jīng)籌集了11790美元，而他們的目標(biāo)是20000美元。