蔡磊进入渐冻症晚期：全身仅眼球能动，起身需3人同时扶

10月27日，据凤凰网报道，渐冻症患者、京东前副总裁蔡磊近况曝光，起身需三人搀扶，一天吃5次药，喝水要加增稠剂靠针管几毫升喂入，一口痰就能让他窒息。

Cai Lei, former vice president of JD.com and an ALS (amyotrophic lateral sclerosis) patient, was reported on Monday to be in the late stages of the disease. Cai can no longer speak, swallow or move independently. Even drinking water requires a thickener and a syringe. A single cough could cause him to suffocate.

据介绍，渐冻症晚期的蔡磊，已被剥夺说话、吞咽、移动的能力，唯一自由的，是那双控制电脑的眼球。

每天，这台眼控仪在深夜依然闪烁。蔡磊从早上8点工作到午夜，每两小时必须躺下拍打身体——没有肌肉缓冲，神经压迫的剧痛如坐针毡。去年在ICU经历7天6夜的生死劫后，蔡磊更加快了工作节奏。

Despite his condition, Cai's eyes remain his only means of control. Through an eye-tracking device, he continues to lead his research and business projects daily — from 8 am until midnight. Every two hours, he must lie down to relieve unbearable nerve pain. After surviving a life-threatening ICU stay last year, Cai has only accelerated his pace of work.

蔡磊研制的药物已为基因型病友带来生机。一位20多岁的女孩用药后重获新生，他由衷地说：“我羡慕你。”尽管这些突破无法用于自身治疗，他依然振奋：“已经拯救了很多生命，大有成就。”

Cai's scientific efforts have already brought hope to others. His team's experimental drug has helped patients with specific genetic types of ALS, with one young woman in her twenties reportedly regaining her ability to move.

Although the breakthroughs cannot be used to treat his own condition, Cai remains upbeat. "Many lives have already been saved, and that is a tremendous achievement," he said.

“战斗成功，才是给家人唯一的希望。”

"Winning this fight," he said, "is the only hope I can give to my family."

当被问及是否遗憾，蔡磊回答：“不怕死亡，最差也是为所有病人奉献自己。”蔡磊本人也在个人社交账号上发声：“记者问我能救别人却不能救自己是不是很失落，我无比开心地说这就是我拼搏的意义！”

When asked about regrets, Cai Lei said he is not afraid of death and can at least dedicate himself to helping other patients. On social media, he added that saving others gives his struggle meaning.

今年9月，蔡磊妻子段睿就曾透露其近况，称蔡磊已经完全没有语言能力了，胳膊、脚、脖子都无法活动，目前仅能吃一点流食。“如果他走了，我会真的很孤独。”

In September, his wife, Duan Rui, revealed that Cai had completely lost his speech and mobility and could only consume small amounts of liquid food.

9月25日晚，蔡磊在社媒发文：看到了大家很关切我的现状，确实现在五体瘫软无法言语，压痛、口水、呛咳、吞咽、憋气每天都在折磨，但我还有眼睛和耳朵，请大家放心，我每天依然在带领团队，科研、运营、合作、人事、财务等等大量工作我每天依然通过眼控在高效处理。

On Sept 25, Cai Lei posted on social media that despite being fully paralyzed and unable to speak, he continues to lead his team, managing research, operations and other tasks through an eye-tracking device.

蔡磊表示：“宁可与渐冻症战死，不会面对绝症屈辱等死。”

He said firmly, "I would rather die fighting ALS than wait for death in humiliation."

他还透露，近期刚宣布了过去20个月对外科研资助超过5000万，这背后是上百个科研项目的合作。“奇迹已经发生，一个个之前必然死亡的病友现在活过来，奇迹必将还继续发生，这是一个AI和生命科学即将点燃的时代！”

Cai announced that his foundation has provided over 50 million yuan in research funding over the past 20 months, supporting more than a hundred scientific projects.

"Miracles are already happening," he said. "Patients once doomed are now surviving. The era of AI and life sciences igniting miracles has begun!"

蔡磊出生于1978年5月，曾担任京东集团副总裁。2019年，他不幸确诊渐冻症，然而这种罕见病目前无药可医。

确诊渐冻症后，蔡磊搭建起“渐愈互助之家”患者医疗大数据科研平台，至今已链接上万名患者。在他的努力下，中国第一个渐冻症病理科研基因样本库得以建立，这一成果为基因层面病因研究打开了新的大门。

他还创立渐冻症公益基金和慈善信托，累计投入数千万元，特别设立“生命科学破冰奖”及“破冰奖学金”。

此前5月18日，蔡磊获得了“全国自强模范”称号。

获表彰后，他用眼控仪写下感言：“获此荣誉，我非常激动，超过我过去所有的荣誉。这是对我的鼓励，更是对和我一样千千万万的渐冻症罕见病群体的关怀。坚持努力，决不放弃，面对艰难，开创美好！”

编辑：李金昳

实习生：孙艺菡

来源：中国新闻网 九派新闻 广东新闻网 海报新闻

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