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1:55
神經纖維瘤:生命帶來的挑戰與重生 因為先天神經纖維瘤,讓20歲的女大生施羽桂外觀明顯與眾不同,她的童年原本與一般孩子無異,,但在國中青春期時,臉部開始產生明顯的變化,右半邊的臉龐逐漸長出腫瘤,甚至一日比一日大,讓施羽桂一度陷入自卑與孤單。最大的轉捩點發生在高中畢業後。當時巨瘤已遮住施羽桂的右眼,嚴重影響視力,但是為了考取機車駕照,讓她終於下定決心接受第一次手術,從緊張到興奮,從術後的恢復室到鏡子前,當她看見自己眼皮重新打開的那一刻,心中湧現前所未有的希望。這不僅是外表的改變,更是心靈的重生,讓她勇敢追求屬於自己的生活。雖然神經纖維瘤會持續增生,她至今已歷經四次臉部切除的大手術,但她的心卻更加堅韌。 第一次的歸屬感,打破孤單的牆 今年暑假,施羽桂延後手術、帶著期待,首次參加羅慧夫顱顏基金會舉辦的青年挑戰營活動。在營隊破冰遊戲中,當她所屬的組別成為最後一名時,施羽桂內心正準備接受被孤立的感覺,沒想到,其他組別的夥伴竟主動伸出援手,幫助他們完成闖關。那一刻,她感受到了久違的溫暖與歸屬感。 夜晚,她與同齡的顱顏夥伴分組同房,讓施羽桂打開心房,第一次把內心的脆弱與掙扎說給同為顱顏病症的朋友聽。施
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羅慧夫顱顏基金會
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