On the evening of February 26, it was announced on social media by a friend of Chen Jingwen, a girl suffering from amyotrophic lateral sclerosis in Hunan, that “Jingwen has permanently left us on the night of February 22,” expressing heartfelt gratitude to all who cared for and helped her. Many netizens expressed their condolences and regrets. Chen Jingwen, who became unable to move her upper body and care for herself after contracting influenza A, was later diagnosed with ALS.
According to a report by the Guangzhou Daily, on February 27, Chen Jingwen’s mother, Luo Manhua, said that Jingwen could not eat for the last five or six days before her passing. Jingwen was buried early on the 27th and had already been laid to rest. She comforted me a few minutes before she passed away, telling me not to worry.
Chen Jingwen was from Huaihua, Hunan. Before her death, she mentioned that in December 2023, after contracting influenza A, she found it very difficult to lift her arms. Three months later, her upper body could hardly move, and she was unable to care for herself.
In June 2024, she was diagnosed with ALS, which changed her appearance as her disease progressed: her mouth was skewed, one eye larger than the other, and the flesh on her cheeks sunken.
In late October last year, the topic of “26-year-old ALS girl gradually learning to face death” became a hot search. Due to prolonged bed rest, Chen Jingwen’s muscles had atrophied, and despite being 1.6 meters tall, she only weighed a little over 70 pounds.
In November of that year, ALS activist Cai Lei encouraged Chen Jingwen to persevere in her fight against freezing, giving her great courage.
It was introduced that Cai Lei, the former Vice President of JD.com, was diagnosed with ALS in 2019 and has been battling the disease for five years.
On February 27, Cai Lei responded to the news of Chen Jingwen’s passing.
He said, “A few days ago, I heard the news of Chen Jingwen’s passing and was deeply saddened. In fact, for over a month, we have been working with hospitals and pharmaceutical companies to accelerate life-saving treatments.”
On January 18, Chen Jingwen posted a video on her social media account, saying, “When encouraged by Uncle Cai Lei, I once said I would persevere in the fight against freezing, but now I really can’t hold on anymore. From diagnosis to now, the progression of the disease has been very rapid, to the point where I am almost overwhelmed by it before I can react. The beauty of before illness seems like yesterday, but in the blink of an eye, I have been tormented by pain to long-term bed rest. I tried to fight the virus, but it’s getting stronger, and I’m getting weaker day by day. Seeing my mother blaming herself, I am truly in pain, I don’t know why this demon chose me. Recently, my condition has been getting worse, and I don’t know how to persevere.”
At the end of January, in another video, she admitted that she did not understand ALS enough, did not detect it early for treatment, and did not provide proper care. Eventually, she realized that she no longer met the criteria for experimental drug trials. Jingwen said, “I may not live until spring blossoms. I can only watch my life slowly slipping away.”
Since being diagnosed with ALS, her appearance has changed drastically, and even swallowing requires all her strength. In the video, Chen Jingwen was unable to speak, and a voice-over was used.
The death of 26-year-old ALS girl Chen Jingwen has sparked widespread attention and sympathy on the internet. Netizens have expressed their condolences and regrets, saying, “It’s such a pity that such a young life has been lost like this,” and “Rest in peace, hope there is no pain in heaven.”
Chen Jingwen’s experience has once again drawn public attention to ALS through influenza A.
Some netizens have called for strengthening social security and medical resource support for rare disease patients, hoping to help alleviate their financial burden and access better treatment.