对于“渐冻人”、“渐冻症”,相信不少朋友都有所耳闻,全球至少50万渐冻人,我国就有20万,比如曾经担任京东副总裁的蔡磊,在四年前不幸患上渐冻症,一直都在顽强抗争。
但是据媒体报道,蔡磊最近第一次公开表达了极为悲怆的情绪,透露自己感觉离死亡越来越近,令人揪心。
蔡磊透露,自己从起床到卫生间5米的距离,都需要有人扶着,吞咽、咳痰情况也在下滑,现在呼吸也已经开始衰竭,必须整夜戴呼吸机,就这也会一夜窒息四次,身体肌能全面下滑,“离死亡已经非常近了”。
他还非常绝望地提问:“拯救50万渐冻症病人的英雄在哪里?”
2019年9月,蔡磊被确诊罕见病ALS,肌萎缩侧索硬化,也就是渐冻症。
当时,他才只有43岁,正值事业巅峰期,而且儿子刚出生几个月。
而在此前,他一门心思扑在高强度的工作上,经常通宵熬夜,直到整条左胳膊麻木得抬不起来才重视,结果为时已晚,很快整个身体都瘫痪了。
蔡磊动用了自己全部的人脉和资源,发誓“老子和它干”,发誓“要么死掉,要么干掉这个病”,还设立了公益基金。
2023年12月12日,蔡磊曾宣称,已在渐冻症的病因上获得突破性发现。
然而,病魔是无情的。2023年8月26日,蔡磊称已在准备身后事……
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