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https://tw.news.yahoo.com/罕病妹五官融化-手術完撐不過走了-053537326.html
罕病妹五官融化 手術完撐不過走了！
三立新聞網 setn.com
25.7k 人追蹤
三立新聞網
2019年3月6日 下午1:35
國際中心／綜合報導
2016年曾接受南韓SBS電視台《瞬間捕捉：世上這種事》(순간포착 세상에 이런일이)採訪的35歲罕病女孩沈玄熙，故事震撼所有網友跟廣大民眾，原本長相相當清秀的她，因為神經纖維瘤惡化，腫瘤覆蓋整個臉部，導致五官下垂，就像是融化一樣。
當時玄熙接受訪問時，因為語言表達能力較差，僅能透過鍵盤傳達訊息時表示，「真的希望自己的臉可以變得小巧可愛，化上美美的妝，穿上漂亮的衣服。」一席話讓當時南韓網友震撼落淚，最後民眾大約募得9億韓圜（約新台幣2464萬元）作為手術費用跟生活費。
檢視相片
▲沈玄熙在2歲時身體就開始出現劇烈轉變。（圖／翻攝自Naver）
2歲就得青光眼、13歲完全失明，玄熙的生活是這麼樣的打擊，但是老天爺終究沒有放過她們一家人。18歲時，玄熙的「神經纖維瘤病」症狀越來越嚴重，皮膚開始下垂，五官開始像是融化一般的漸漸脫離原本的樣貌。神經纖維瘤算是一種遺傳疾病，可能會在神經系統形成腫瘤或是影響非神經組織的發展，目前也沒有藥物治療，僅能靠手術。
因為臉部開始走樣，玄熙也無法好好吃飯，只剩下30公斤的她也不願意踏出家門，製作單位採訪時，她打出自己的心情，「不想活了因為動手術需要很多錢，這樣家人很辛苦，也不喜歡別人的視線，雖然看不到但是問那些問題我都聽得見，可以的話希望可以變回可愛的樣子，化妝美美的。」
檢視相片
▲玄熙的媽媽相當自責。（圖／翻攝自Naver）
玄熙的媽媽表示，懷孕時，發現皮膚出現一顆顆的小瘤，因此都覺得自己害女兒這樣的，甚至出現想要輕生的念頭。最後一家人收到募款後，決定讓玄熙嘗試手術治療，沒想到事隔3年後，4日南韓媒體報導，玄熙在第二次手術復健後，因為醫療疏失導致頭部受傷，所以每次手術都會出現失血過多的問題，這次手術後更加惡化，雖有急救還是挽回不了玄熙的性命，享年35歲。
玄熙當時知道自己得到大眾的募資，對人生燃起希望，還曾說過「我會努力活著，會堅強面對這世界，若恢復康復，我一輩子都會帶著感恩的心活下去。」（編輯：陳亭伃）
更多三立新聞網報導
The five-year-old girl's facial features melted.
[三立新闻网 setn.com]
Sanli News Network setn.com
25.7k person tracking
Sanli News Net
March 6, 2019 1:35 PM
International Center / Comprehensive Report
In 2016, Shen Xiaoxi, a 35-year-old girl who was interviewed by South Korean SBS TV station "Instant Capture: This World" (순간포착세상에이런일이), shocked all netizens and the general public. She was quite handsome because of her nerve fibers. The tumor deteriorates and the tumor covers the entire face, causing the facial features to sag, just like melting.
At that time, when Xuanxi accepted the interview, because of his poor language ability, he could only convey the message through the keyboard. "I really hope that my face can be made small and cute, and I will put on beautiful makeup and beautiful clothes." At that time, South Korean netizens were shocked, and finally the people raised about 900 million Korean won (about NT$24.64 million) for surgery and living expenses.
View photos
▲ Shen Xuanxi began to undergo a dramatic change when he was 2 years old. (Figure / flip from Naver)
At the age of 2, he had glaucoma and 13 years old was completely blind. Xuanxi’s life was such a blow, but God did not let them go. At the age of 18, Xuanxi’s “neurofibromatosis” symptoms became more and more serious, and the skin began to sag. The facial features began to melt away from the original appearance. Neurofibromatosis is a genetic disease that may form tumors in the nervous system or affect the development of non-neural tissues. Currently, there is no medical treatment, and surgery is only possible.
Because the face began to look like, Xuanxi could not eat well. Only 30 kg left, she was not willing to step out of the house. When the production unit interviewed, she played her own mood. "I don't want to live because the surgery requires a lot of money. The family is very hard and doesn't like the sight of others. Although I can't see it, I can hear those questions. If I can, I hope I can change back to a cute look and make a beautiful dress."
View photos
▲ Xuanxi’s mother is quite self-blaming. (Figure / flip from Naver)
Xuanxi's mother said that when she was pregnant, she found a small tumor on her skin. Therefore, she felt that she was harming her daughter, and she even had the idea of being suicidal. After the family received the fundraising, they decided to let Xuanxi try surgery. I didn’t expect that after three years, the South Korean media reported that Xuanxi’s head injury was caused by medical negligence after the second surgery. Therefore, every operation will have the problem of excessive blood loss. This operation is worse after the operation. Although there is a first aid, it can't save Xuanxi's life, at the age of 35.
At that time, Xuanxi knew that he had received public fundraising and ignited hope for life. He also said, "I will work hard and will face the world with great strength. If I recover, I will live with gratitude for the rest of my life. (Editor: Chen Tingkai)
More Sanli News Network reports
罕病妹五官融化 手術完撐不過走了！
三立新聞網 setn.com
25.7k 人追蹤
三立新聞網
2019年3月6日 下午1:35
國際中心／綜合報導
2016年曾接受南韓SBS電視台《瞬間捕捉：世上這種事》(순간포착 세상에 이런일이)採訪的35歲罕病女孩沈玄熙，故事震撼所有網友跟廣大民眾，原本長相相當清秀的她，因為神經纖維瘤惡化，腫瘤覆蓋整個臉部，導致五官下垂，就像是融化一樣。
當時玄熙接受訪問時，因為語言表達能力較差，僅能透過鍵盤傳達訊息時表示，「真的希望自己的臉可以變得小巧可愛，化上美美的妝，穿上漂亮的衣服。」一席話讓當時南韓網友震撼落淚，最後民眾大約募得9億韓圜（約新台幣2464萬元）作為手術費用跟生活費。
檢視相片
▲沈玄熙在2歲時身體就開始出現劇烈轉變。（圖／翻攝自Naver）
2歲就得青光眼、13歲完全失明，玄熙的生活是這麼樣的打擊，但是老天爺終究沒有放過她們一家人。18歲時，玄熙的「神經纖維瘤病」症狀越來越嚴重，皮膚開始下垂，五官開始像是融化一般的漸漸脫離原本的樣貌。神經纖維瘤算是一種遺傳疾病，可能會在神經系統形成腫瘤或是影響非神經組織的發展，目前也沒有藥物治療，僅能靠手術。
因為臉部開始走樣，玄熙也無法好好吃飯，只剩下30公斤的她也不願意踏出家門，製作單位採訪時，她打出自己的心情，「不想活了因為動手術需要很多錢，這樣家人很辛苦，也不喜歡別人的視線，雖然看不到但是問那些問題我都聽得見，可以的話希望可以變回可愛的樣子，化妝美美的。」
檢視相片
▲玄熙的媽媽相當自責。（圖／翻攝自Naver）
玄熙的媽媽表示，懷孕時，發現皮膚出現一顆顆的小瘤，因此都覺得自己害女兒這樣的，甚至出現想要輕生的念頭。最後一家人收到募款後，決定讓玄熙嘗試手術治療，沒想到事隔3年後，4日南韓媒體報導，玄熙在第二次手術復健後，因為醫療疏失導致頭部受傷，所以每次手術都會出現失血過多的問題，這次手術後更加惡化，雖有急救還是挽回不了玄熙的性命，享年35歲。
玄熙當時知道自己得到大眾的募資，對人生燃起希望，還曾說過「我會努力活著，會堅強面對這世界，若恢復康復，我一輩子都會帶著感恩的心活下去。」（編輯：陳亭伃）
更多三立新聞網報導
The five-year-old girl's facial features melted.
[三立新闻网 setn.com]
Sanli News Network setn.com
25.7k person tracking
Sanli News Net
March 6, 2019 1:35 PM
International Center / Comprehensive Report
In 2016, Shen Xiaoxi, a 35-year-old girl who was interviewed by South Korean SBS TV station "Instant Capture: This World" (순간포착세상에이런일이), shocked all netizens and the general public. She was quite handsome because of her nerve fibers. The tumor deteriorates and the tumor covers the entire face, causing the facial features to sag, just like melting.
At that time, when Xuanxi accepted the interview, because of his poor language ability, he could only convey the message through the keyboard. "I really hope that my face can be made small and cute, and I will put on beautiful makeup and beautiful clothes." At that time, South Korean netizens were shocked, and finally the people raised about 900 million Korean won (about NT$24.64 million) for surgery and living expenses.
View photos
▲ Shen Xuanxi began to undergo a dramatic change when he was 2 years old. (Figure / flip from Naver)
At the age of 2, he had glaucoma and 13 years old was completely blind. Xuanxi’s life was such a blow, but God did not let them go. At the age of 18, Xuanxi’s “neurofibromatosis” symptoms became more and more serious, and the skin began to sag. The facial features began to melt away from the original appearance. Neurofibromatosis is a genetic disease that may form tumors in the nervous system or affect the development of non-neural tissues. Currently, there is no medical treatment, and surgery is only possible.
Because the face began to look like, Xuanxi could not eat well. Only 30 kg left, she was not willing to step out of the house. When the production unit interviewed, she played her own mood. "I don't want to live because the surgery requires a lot of money. The family is very hard and doesn't like the sight of others. Although I can't see it, I can hear those questions. If I can, I hope I can change back to a cute look and make a beautiful dress."
View photos
▲ Xuanxi’s mother is quite self-blaming. (Figure / flip from Naver)
Xuanxi's mother said that when she was pregnant, she found a small tumor on her skin. Therefore, she felt that she was harming her daughter, and she even had the idea of being suicidal. After the family received the fundraising, they decided to let Xuanxi try surgery. I didn’t expect that after three years, the South Korean media reported that Xuanxi’s head injury was caused by medical negligence after the second surgery. Therefore, every operation will have the problem of excessive blood loss. This operation is worse after the operation. Although there is a first aid, it can't save Xuanxi's life, at the age of 35.
At that time, Xuanxi knew that he had received public fundraising and ignited hope for life. He also said, "I will work hard and will face the world with great strength. If I recover, I will live with gratitude for the rest of my life. (Editor: Chen Tingkai)
More Sanli News Network reports
