瑜芳的故事分享2014-02-14

   「自從我懂事以來，回憶起小時候，父母親經常不辭勞苦的往醫院奔波，平常更是把我照顧得無微不至，雖然說全天下的父母親都一樣很偉大，但嚴格說起來，PKU患者的父母親應該更偉大些，因為照顧我們這一群孩子需要花更多的時間、愛心和耐心，那是一般的父母親很難想像的。

    我身為一位PKU患者，不知道說是幸運或者不幸。幸運的是，我在新生兒篩檢時及早發現，才不至於導致嚴重的後果；不幸的是我竟得了那麼罕見的疾病，機率是那麼的小，但我卻中獎了，真不知父母會怎麼想？記得小時候，經常會忘了吃藥，然後身體就會感覺很痛苦，例如：喉嚨無法張開，口水吞不下去，眼睛會不由自主的一直往上看，還會覺得很想睡覺，但往往吃了藥，睡醒後就好了，現在年紀稍長，吃藥也變成了習慣，所以也就不會忘記吃藥了。

    我現在可以像一般小孩一樣過正常的生活，可以一起競爭，一起切磋功課，這都要感謝牛醫生等所有的醫療團隊，他們那麼盡心地為我們爭取福利，來治療我們這一群，盡量給我們最方便、最適合的服務，所有我們也要盡量配合醫師。在此，也希望各位父母不要放棄自己的小孩，所謂「有志者事竟成」，就讓我們一起共勉吧！



 

作者：網站管理員

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