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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