遺傳性表⽪分解性⽔皰症(Hereditary Epidermolysis Bullosa)是一種罕見的遺傳性疾病,病人往往一出生皮膚就異常地脆弱,稍微地摩擦隨即造成破皮或產生腫大的水泡,因此被暱稱為「泡泡龍」。這群孩子先天就帶著傷痕,但依然不能阻止他們的生命放出光輝,讓我們一起看看他們的故事。
「我和媽媽一直有個信念,就是不想一輩子都當病人。大家應該很難想像,我們用了多少毅力和耐力來面對這些。」佩菁不斷挑戰自我,不僅考取街頭藝人證照、出版繪本、辦畫展、義賣畫作…「當我攤開畫紙,畫出我的故 …
遺傳性表⽪分解性⽔皰症(Hereditary Epidermolysis Bullosa)是一種罕見的遺傳性疾病,病人往往一出生皮膚就異常地脆弱,稍微地摩擦隨即造成破皮或產生腫大的水泡,因此被暱稱為「泡泡龍」。這群孩子先天就帶著傷痕,但依然不能阻止他們的生命放出光輝,讓我們一起看看他們的故事。
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