Recently, the Hunan woman with amyotrophic lateral sclerosis, Chen Jingwen, who became popular for seeking help from former JD.com vice president Cai Lei, has released a new video to talk about her current situation. She sadly expressed, “I may not live to see the spring blossoms,” and “I can only watch my life slowly slipping away.”
On January 28, Jiupai News reported that Chen Jingwen mentioned that due to her narrow understanding, she didn’t have enough knowledge about ALS before, resulting in a lack of early detection, treatment, and proper care, and as a result, she no longer qualifies for the drug trial. Chen Jingwen said that in December 2023, after suffering from a bout of influenza, she found it difficult to lift her arms. Three months later, she could hardly move her upper body and couldn’t take care of herself. In June of this year, she was diagnosed with ALS, and the progression of the disease has changed her appearance: her mouth is crooked, one eye is bigger than the other, and the flesh on her cheeks has sunk.
Chen Jingwen, from Huaihua, Hunan, has muscle atrophy due to long-term bed rest and weighs only a little over 70 pounds with a height of 1.6 meters. In late October last year, the story of the “26-year-old ALS girl slowly learning to face death” became trending.
In November of the same year, ALS activist Cai Lei encouraged Chen Jingwen to persevere in her fight against the disease, giving her great courage. On January 18 this year, Chen Jingwen posted a video saying, “When Uncle Cai Lei encouraged me, I said I would persevere in the fight, but now I really can’t hold on. From the diagnosis to now, the progression of the disease is really fast, almost overwhelming me before I can react. The beauty of life before the illness seems like just yesterday, but in the blink of an eye, I’m bedridden by the pain, struggling to fight the virus, but it’s growing stronger day by day, while I’m getting weaker. Seeing my mother blame herself makes me incredibly painful, I don’t know why this demon chose me. Recently, my physical condition has deteriorated, and I don’t know how to keep going.”
After being diagnosed with ALS for more than a year, Chen Jingwen’s appearance has changed drastically, and even swallowing requires all her strength. In the video seeking help, Chen Jingwen can no longer speak, and the voice on the video is a recording. On January 19, Cai Lei replied, “I also haven’t been able to sleep well these days. Her life is in critical condition, time is ticking, but how can we save her? The medication in the U.S. costs 1.4 million RMB per year (the pharmaceutical company still doesn’t make a profit), and she can’t afford it; I can’t ask the pharmaceutical company to illegally provide her with medication. The pharmaceutical company also no longer has the capacity to develop compassionate use medication. Recently, we have started a difficult phase I clinical trial with the pharmaceutical company, thinking it could help her, but unfortunately, her condition progressed rapidly and no longer meets the ethical and clinical trial eligibility criteria.”
During her primary school years, Chen Jingwen’s father incurred debts, leading her mother to work outside with her parents, making Chen Jingwen a left-behind child. At the age of 13, she started working. In 2021, she came to Hangzhou to work in sales. She never expected to later develop ALS.
Now, Chen Jingwen records her life through videos and does live broadcasts. The disease has affected her swallowing function, so even when she’s hungry, she doesn’t have the strength to eat. A friend peeled an orange for her, and she chewed for half a minute before slowly swallowing. After two slices, she couldn’t eat anymore, feeling exhausted.