10月27日，據(jù)鳳凰網(wǎng)報道，漸凍癥患者、京東前副總裁蔡磊近況曝光，起身需三人攙扶，一天吃5次藥，喝水要加增稠劑靠針管幾毫升喂入，一口痰就能讓他窒息。

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.

據(jù)介紹，漸凍癥晚期的蔡磊，已被剝奪說話、吞咽、移動的能力，唯一自由的，是那雙控制電腦的眼球。

每天，這臺眼控儀在深夜依然閃爍。蔡磊從早上8點工作到午夜，每兩小時必須躺下拍打身體——沒有肌肉緩沖，神經(jīng)壓迫的劇痛如坐針氈。去年在ICU經(jīng)歷7天6夜的生死劫后，蔡磊更加快了工作節(jié)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.

蔡磊研制的藥物已為基因型病友帶來生機。一位20多歲的女孩用藥后重獲新生，他由衷地說：“我羨慕你?！北M管這些突破無法用于自身治療，他依然振奮：“已經(jīng)拯救了很多生命，大有成就?！?/p>

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.

“戰(zhàn)斗成功，才是給家人唯一的希望?！?/p>

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

當被問及是否遺憾，蔡磊回答：“不怕死亡，最差也是為所有病人奉獻自己。”蔡磊本人也在個人社交賬號上發(fā)聲：“記者問我能救別人卻不能救自己是不是很失落，我無比開心地說這就是我拼搏的意義！”

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況，稱蔡磊已經(jīng)完全沒有語言能力了，胳膊、腳、脖子都無法活動，目前僅能吃一點流食?！叭绻吡?，我會真的很孤獨?！?/p>

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，蔡磊在社媒發(fā)文：看到了大家很關(guān)切我的現(xiàn)狀，確實現(xiàn)在五體癱軟無法言語，壓痛、口水、嗆咳、吞咽、憋氣每天都在折磨，但我還有眼睛和耳朵，請大家放心，我每天依然在帶領(lǐng)團隊，科研、運營、合作、人事、財務(wù)等等大量工作我每天依然通過眼控在高效處理。

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：“寧可與漸凍癥戰(zhàn)死，不會面對絕癥屈辱等死?！?/strong>

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

他還透露，近期剛宣布了過去20個月對外科研資助超過5000萬，這背后是上百個科研項目的合作?！捌孥E已經(jīng)發(fā)生，一個個之前必然死亡的病友現(xiàn)在活過來，奇跡必將還繼續(xù)發(fā)生，這是一個AI和生命科學即將點燃的時代！”

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，曾擔任京東集團副總裁。2019年，他不幸確診漸凍癥，然而這種罕見病目前無藥可醫(yī)。

確診漸凍癥后，蔡磊搭建起“漸愈互助之家”患者醫(yī)療大數(shù)據(jù)科研平臺，至今已鏈接上萬名患者。在他的努力下，中國第一個漸凍癥病理科研基因樣本庫得以建立，這一成果為基因?qū)用娌∫蜓芯看蜷_了新的大門。

他還創(chuàng)立漸凍癥公益基金和慈善信托，累計投入數(shù)千萬元，特別設(shè)立“生命科學破冰獎”及“破冰獎學金”。

此前5月18日，蔡磊獲得了“全國自強模范”稱號。

獲表彰后，他用眼控儀寫下感言：“獲此榮譽，我非常激動，超過我過去所有的榮譽。這是對我的鼓勵，更是對和我一樣千千萬萬的漸凍癥罕見病群體的關(guān)懷。堅持努力，決不放棄，面對艱難，開創(chuàng)美好！”

編輯：李金昳

實習生：孫藝菡

來源：中國新聞網(wǎng) 九派新聞 廣東新聞網(wǎng) 海報新聞

跟著China Daily

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