【本報訊】祝小朋友快高長大,對於蕭曉進的父母來說,或是一個無法達成的祝福。6歲的進進患有罕見病──黏多醣症第四A型(莫奎歐氏症),導致全身骨骼和關節異常發展,除身形永遠停留在兩歲外,日常生活也無法自理。外國近年研究一種新藥可治此病,無奈非常昂貴,一年藥費以百萬元計,進進的家人希望醫管局及早將新藥納入藥物名冊及提供資助,否則只能眼睜睜看着進進身體漸漸衰退。
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