境晨的故事分享:「堅持,必能擁有自己的一片天!」2014-02-14

【作者為洪境晨 苯酮尿症患者】

    我是洪境晨,與其他同年齡的同學一樣,早上起來套上衣服去學校,課堂上專心做筆記,體育課奔馳在運動場上,甚至課後還得跑補習班或跑社團。雖然是PKU(苯酮尿症)患者,但我的生活跟其他同學無異,一樣要考升學考試,考完還去打工,唯一和別人不同的是我的飲食。

    小時候看到大家吃魚吃肉,自己盤裡則是一堆「五穀野草」,看了真的挺不習慣的。雖跟大家說我吃素,但有團體活動我還得註明蛋豆不可食、可窩邊素,到外面和同學朋友聚餐還得「搶菜吃」,的確有些麻煩。不過,過了這十八年多的日子,我也習慣了,已經認為自己與常人無異。

    當然能如此自在生活,還得要有良好的飲食控制。從小,在飲食上家人細心控制,加上現在對自己飲食的嚴格要求,造就了現在的我。回想過去,飲食控制的好壞的確會影響我的學習狀況。小一小二時,爸媽對於飲食控制還不太純熟,那時我在班上成績普普;經由與林明潔營養師學習飲食控制的原則與做法後,到小四時成績突飛猛進,甚至在國高中成績都名列前矛。對於終身飲食控制和特殊牛奶攝取的重要性,我真的有切身的體悟。

    最近我考完學測,目前在幫牛醫師做電訪,發現有些小朋友以長大或太忙等為藉口,拒絕飲食控制和喝特殊奶粉,這真的是不智之舉!我是因為長年的飲食控制有了經驗,現在對於自己如何控制飲食都能得心應手,智力發展與常人無異。如果小朋友有鬧脾氣的、處於判逆期的青少年,家長更應該狠下心來,才不會讓他們智力造成長期的傷害。

    聽家人說,我小時候也會對不能吃的東西有興趣,仍被嚴格禁止。這樣感覺很殘忍,但以我目前的成就,我會很感謝家人當時堅持嚴格的飲食控制,使得苯丙胺酸沒有傷害到我的腦部,使我前途依舊光明,能對未來充滿無限的期待。台清交成是許多人的夢想大學,我考上交通大學,達成了這個目標,證明PKU患者都能有這個能力,只是我們得控制好自己的飲食作為本錢,才能與其他人在同一個立足點做競爭。

    我國中時成績相當優異,還曾考過校排第一,但最後基測分數不如預期,上了延平中學。到了高中成績依舊不錯,當時牛醫師甚至希望我能試試看以醫學系為目標,最後我是以70級分(可上台大熱門科系)考到交大電機學院。我相信我指考還能考得更好,但我和家人已相當滿意,未來希望能往生醫工程發展,並像爸爸一樣做一個大學教授。

    考上大學後,我想做的不只充實自己,也希望對其他PKU患者提供我個人的經驗幫助。之前幫忙電話聯絡其他病友,也去過牛醫師的門診見習,碰巧認識了思穎;最近我還是宇安的理化家教。這些和我一樣的戰友們,我相信苯酮尿症不會是絆腳石,我們都能在廣大的人群中發光發熱。我能考上交大,表示我們都可以,只要我們心中能接受自己相對於常人的小缺陷,並做好自己,創造屬於自己的美好人生,我們都能是自己生命舞台的贏家。除了我以外,就讀輔仁大學的建福、努力工讀的思穎、成績名列前矛的宇安、受到我媽強烈讚賞的長安、報紙上看到學業優異的曜丞、采諭等等,我們只要能堅持終生的飲食(或藥物)控制這道關卡,必能擁有自己的一片天。



 
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