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建福的故事分享
2014-02-14
我於民國78年3月1日在高雄長庚醫院出生,過了九天後,就發現一種非常罕見的遺傳疾病,叫做「苯酮尿症」,也叫PKU。
我剛開始還不是很認識這種疾病,以為只是大人們說說好玩的,所以我根本不在乎什麼飲食控制。
直到進小學二年級有一次,頭就忽然痛起來,痛的頭都快要爆炸了!經過了這次慘痛的教訓之後。我就開始向爸媽學習這種疾病和各類食品,並隨時做飲食控制,至今已經近五年了,所有的病痛都迎刃而解,目前課業可以像一般同學一樣勝任愉快!
我最喜愛的課業是電腦、國語、音樂、美術、素描……等等,最愛的卡通是日本偵探片柯南及神奇寶貝…,爸媽工作之餘,最愛聽音樂並聽聽我與弟弟(今年八歲)共鳴琴聲或笛琴,與抒解工作壓力。
我在學校雖然飲食和別人不一樣,不能吃大魚大肉,必須定時服用藥物、飲用特殊奶粉,可是目
前的我身心卻和別人一樣健康。深信像媽媽跟同學們演講所說的:「苯酮尿症是遺傳疾病,不是傳染病。」
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