Cai Lei, former executive at Chinese e-commerce giant JD, holds fast to the mission of advancing ALS drug research even as the debilitating disease overwhelms him and his family with physical and emotional hardships.
Seven years have passed since Cai was diagnosed with ALS, or amyotrophic lateral sclerosis. Since then, he and his wife Duan Rui have endured a tough journey of love and perseverance. Separated by practical needs and health concerns, the once inseparable couple now fight their battle on separate fronts.
Cai has waged a relentless fight against ALS since 2019. The progressive disease has steadily stripped him of his mobility and verbal abilities. Over the past year, he has relied entirely on an eye-tracking device to communicate with the outside world. Despite his severe physical deterioration, Cai persists in working until 23:00 every single day, dedicating his remaining strength to ALS drug research.
To sustain Cai's long-term scientific research, Duan Rui launched the "Breaking the Ice Station" live-stream channel to raise continuous funds. The couple now live apart out of necessity. Cai resides near a hospital for convenient medical care, while Duan lives close to their son's school to take care of the child. The separation also helps lower the risk of infection for the critically ill Cai. Having once spent every moment together, the pair now undertake their respective responsibilities in solitude.
Though they carry out their tasks independently and rarely meet in person, the couple shares an implicit spiritual bond, devoting themselves wholeheartedly to the same goal of overcoming the incurable disease.
When asked about his plans for the Mid-Autumn Festival, which fell on Friday this year, Cai said he had abandoned almost all traditional festival celebrations over the past seven years.
"We have barely even celebrated the Spring Festival over the past seven years. We used to just have a family dinner, but even that no longer happens. It is precious just to be alive and able to get things done," said Cai through his eye-tracking device.
Pressed on how frequently the pair get together, Duan admitted their reunions are extremely rare.
"Very rarely. I want to see him, yet every time we meet, it hurts deeply," she shared.
Cai explained that he actively minimizes face-to-face meetings to spare his wife's suffering.
"I usually ask them not to visit me. I cannot speak when we meet, and it is painful for her," he said.
"I have never been able to accept it. No amount of preparation makes it easier. That is why I am afraid to see him now," said Duan.
"We communicate smoothly via WeChat, where I am still just an ordinary person. It is better for us to reunite properly after we defeat this disease," Cai said.
Duan added that Cai always tries to shield her from sorrow and hopes she can stay positive. She is certain that he still holds firm to his love for his family and strives to take care of them.
"He sees how sad I am, and he hopes I can stay happier. What breaks my heart most is that even with his physical condition, he still tries his best to look after the family. For example, he ordered seafood online for my birthday," she said.
In terms of fundraising alone, the couple has already made an enormous impact. They have invested 100 million yuan (about 15 million U.S. dollars) of their own money into the efforts to find a cure, while sales through Duan's live-stream channel have raised millions more.
Former JD executive strives through debilitation to find cure for ALS
