Shiloh Pepin, a girl who was born with fused legs, a rare condition often called “mermaid syndrome,” and gained a wide following on the Internet and U.S. television, has died at Maine Medical Center on Oct. 23. She was 10.
出生時因罹患罕見疾病「美人魚症候群」而兩腿併合的女孩希蘿‧佩平，已於10月23日於緬因州醫學中心去世，年僅10歲。她在網路和美國電視上人氣破表。
Doctors had predicted she would at most only survive for days after her birth. Earlier last month, her mother, Leslie Pepin, said her daughter came down with a cold that quickly turned to pneumonia. Shiloh was rushed to Maine Medical Center on Oct. 10 and placed on antibiotics and a ventilator. For a while, Leslie Pepin said, things were looking up. "She's a tough little thing," she said of her daughter. But she died on Oct. 23.
希蘿出生後，醫師就預言，她頂多只能活幾天。上月初，她母親萊絲莉‧佩平說，她女兒突然感冒，並迅速轉為肺炎。希蘿於10月10日送往緬因州醫學中心急救，施打抗生素並戴上呼吸器。萊絲莉說，有一陣子，她病情好轉，在她母親口中，她是個「堅強的小傢伙」，但她還是在10月23日走了。
Being born with “mermaid syndrome,” also known as sirenomelia, meant that the Kennebunkport girl had only one partially working kidney, no lower colon or genital organs and legs fused from the waist down.
希蘿一出生就患有「美人魚症候群」，也就是併肢畸形，使這個緬因州肯尼邦克港的女孩只有一枚功能不全的腎，也沒有結腸下半部或生殖器官，同時從腰部以下併肢。
Some children who have survived sirenomelia have had surgery to separate their legs, but Shiloh did not because blood vessels crossing from side to side in her circulatory system would have been severed. She had received two kidney transplants, the last one in 2007.
有些併肢畸形兒可以動手術分割雙腿，希蘿則因循環系統的血管左右交纏，恐有遭切斷之虞而無法開刀。她曾接受兩次腎臟移植，最後一次是在2007年。
Matt Hand is the director of pediatric nephrology at the Barbara Bush Children's Hospital at Maine Medical Center. As a specialist, he'd seen some unusual cases before, but he'd never seen a baby like Shiloh Pepin before, much less agreed to work with one. But his first look at Shiloh convinced him to try.
麥特‧韓德是緬因州醫學中心芭芭拉布希兒童醫院小兒腎臟科主任。身為專家，他過去曾看過幾起不尋常的病例，但他從未看過像希蘿‧佩平這種嬰兒，遑論同意醫治她了。但當他第一眼看到希蘿，就說服自己要試試看。
“It was similar to the mermaid myth,” he recalls. “She was a strikingly beautiful little baby.” But wanting to help and knowing what to do were two different things, as Hand soon found out. With, at that time, only one other known survivor of the disease sirenomelia alive, there really wasn't a blueprint for treatment.
他回憶說：「這就像美人魚的傳奇故事，她是個非常漂亮的小娃娃。」但韓德很快發現，想幫助和知道怎麼做是兩回事。當時只有另一個已知併肢畸形患者還活著，要治病其實沒什麼參考藍本。
The only other living child with sirenomelia in the world was Tiffany Yorks, then an 11-year-old living in Florida. “I talked to her surgeon after meeting Shiloh,” Hand says. “But Shiloh's case is much more severe.” Yorks wasn't having problems with kidney function, while that was clearly Shiloh's biggest obstacle.
當時另一個還在世的併肢畸形兒是佛羅里達州11歲的女孩提芬妮‧約克斯。韓德說：「看過希蘿後，我曾和她的醫生交換意見，但希蘿的病情嚴重的多。」約克斯腎臟功能健全，而這正是希蘿最大的致命傷。
While those around her fought to save her life, little Shiloh did the only thing she knew how: She lived. When other babies her age learned to sit up, so did Shiloh. When other babies made sounds, so did she. And when they learned to walk, taking those first tentative steps, Shiloh developed her own style of getting around — she scooted, pulling herself along with her hands.
當她周遭的人為了拯救她的生命而奮戰時，小希蘿只能做她知道自己能做的唯一一件事：她活著。當其他同年齡的小娃娃學坐時，希蘿也跟著學；當其他娃娃學說話時，她也不落人後。而當他們學走路，忐忑嘗試跨出第一步時，希蘿以她自己的方式四處移動，她坐在划板上用雙手在地上匐匍前進。
Seeing her look so healthy and happy, it was hard to believe doctors had once told her parents to take her home to die. After kidney transplant, little Shiloh had more energy than she had before. She started to grow faster and be able to do more. She learned to love swimming and playing with her older cousin Sammie, who she adored. Days turned into weeks, weeks into months and months into years. Finally, one day the little girl was old enough to start school. But Hand knew there was an even tougher road ahead.
眼看她這麼健康快樂，很難想像醫生一度告訴她父母帶她回家等死。移植腎臟後，小希蘿比之前更精力充沛，她長更快，能做的事也更多了，她學會游泳，還和她最愛的堂哥山姆一起玩。日子一天天過去，一周周過去，一年年過去，積年累月的，有一天，這個小女孩終於到了上學的年紀，但韓德心裡有數，前面的路更艱辛。
“Matt told us we could homeschool her,” Leslie says. “You have to worry about infection. But if we homeschooled her, she'd only see here, she wouldn't see anything else out there.” The Pepins didn't want that for little Shiloh. They believed their child deserved a “normal” life — one with school and trips and friends. They didn't want her treated like a disabled child.
萊絲莉說：「麥特告訴我們，由於擔心感染，我們可以在家裡教育她。但如果她在家自學，就只能看到這裡，外面的世界全看不到。」佩平夫婦不希望小希蘿這麼過日子，他們相信，他們的孩子應該過「正常的」生活，去上學、旅行、認識朋友，他們不希望把她當成肢障兒。
Little Shiloh was up to the challenge. She was a fifth-grader at Kennebunkport Consolidated School when she died. “She had such a shining personality,” said Maureen King, chairwoman of the board of the regional school district. Shiloh used a wheelchair to get around at school. Surrounded by people who loved her unconditionally and parents who fiercely fought to give her as normal a childhood as possible, Shiloh was growing into a confident, happy child who used humor to get over the bumpy patches in life.
小希蘿也努力迎接挑戰，她死前已是肯尼邦克港聯合學校五年級學生。當地學區委員會主席莫琳‧金恩說：「她個性極為陽光。」在校時，她以輪椅代步。在無條件愛她的人包圍下，在父母盡全力為她打造一個正常的童年下，希蘿長大成為一個自信快樂的孩子，她以幽默克服生命中顛簸崎嶇的路障。
Her story was featured recently on “The Oprah Winfrey Show”and other national television programs. Through the television shows, news articles, Facebook and other Web sites, Shiloh inspired many. “I live in Iowa. I have cerebral palsy, 12-year-old Lydia Dawley wrote to Shiloh on Facebook. “I wish you lived close so we could be friends and hang out. You opened my eyes because you are so brave.”
她的故事最近在「歐普拉溫芙蕾秀」和其他全國性節目中播出。透過電視節目、新聞報導、臉書及其他網站，希蘿啟發了無數人。12歲的莉狄亞‧道利上臉書寫信給希蘿說：「我住在愛阿華州，我是腦性麻痺患者，真希望妳住在附近，這樣我們就能交朋友，一起出去玩。妳這麼勇敢，使我大開眼界。」
In this 2007 photo, Shiloh Pepin laughs with her parents while sitting on a counter in the family's Kennebunkport, Maine home. Shiloh, who was born with a rare condition called "mermaid syndrome," died Oct. 23. She was 10.
在這張2007年檔案照中，小希蘿坐在位於緬因州肯尼邦克港家中的桌子上和父母快樂的嘻笑。希蘿一出生就罹患所謂的「美人魚症候群」，她於今年10月23日去世，年僅10歲。（美聯社）