More than 30 years ago, Cai Lei, who was still in the third grade, met two senior "punks" after school, and one of the boys slapped Cai Lei on the back of the head as a sign of provocation. After being stunned for a few seconds, Cai Lei grabbed the strap of his schoolbag and slammed the boy behind him...
"I know I can't do them, but if you dare to provoke me, I will dare to do it with you." This was Cai Lei's simple cognition as an eight- or nine-year-old boy at that time.
More than thirty years later, the skinny boy of that year has many new titles and labels, the former vice president of Jingdong Group, the graduate off-campus tutor of many well-known universities, and the promoter of electronic invoices in China... However, one of his most important identities now is that of a frostbite fighter. This time he encountered a most domineering and arrogant opponent, but his first reaction was still - to take the initiative to attack.
Can't wait to die! The final struggle of a person with ALS
At the end of September 2019, the 41-year-old Cai Lei suffered the biggest blow in his life, and his fate was intertwined with frostbite, one of the world's five major terminal diseases.
"There should be only one possibility." His attending doctor, Fan Dongsheng, a leading expert in the field of ALS diagnosis and treatment in China, completely changed the life of the then vice president of JD.com Group in one sentence.
ALS, also known as amyotrophic lateral sclerosis, has an average survival of 2 to 5 years, and there are currently no drugs to stop or reverse the disease, and the effect of delaying the course of the disease is weak.
A person who usually doesn't even want to wait for an elevator can only wait for death now? Hospitalization for check-ups, asking for medical treatment, witnessing patients leaving... Cai Lei has experienced everything that ordinary patients experience.
Is there really no way? He realized that he had to do something - since there was no drug, he would take the initiative to promote research and development! In the nearly four years since, it became the most important task of Cai's life, and he said he was "the last time to start a business."
"I now work for more than 10 hours a day, and I have to reply to thousands of messages." When the reporter met Cai Lei, it was a midsummer afternoon, and the maximum temperature in Beijing exceeded 40 degrees Celsius, but Cai Lei was so busy that he had no time to eat.
After hurriedly finishing lunch, Cai Lei introduced his work progress to reporters, "We now have more than 20 groups of frostbite patients, each group has 500 people, and now the number of patients adds up to more than 10,000." ”
The addition of these patients is crucial to the work Cai Lei is doing, and the research data platform "Gradual Healing Mutual Aid Home" led by him has reached more than 10,000 patients, becoming the world's largest scientific research platform for ALS patients.
Compared with the past when there were only a small number of cases in each hospital and the data could not be connected, the establishment of this platform will greatly promote disease research and drug development. In Cai Lei's words, researchers can not only obtain more adequate research data, but also bring together a large number of patients to solve the problem of patient recruitment in clinical drug development, and also help seek investors to see the investment value behind it.
"If we just wait, isn't there no hope?" Cai Lei said that people often think that with the advancement of science and technology, new drugs seem to be developed naturally, but in fact, this is inseparable from human promotion.
"There is not much time left for me"
After his illness, Cai Lei's work pace did not slow down, and now he is almost filled up with work every day except sleeping.
"You're killing yourself!" His wife and those around him had complained about him in this way.
This is not alarmist, because Cai Lei's condition is progressing at a speed visible to the naked eye, about July and August last year, he can still use the mobile phone to operate, but at the beginning of this year, his two hands are completely "wasted", eating, drinking, dressing must rely on the help of others, and the mouse can only rely on a special pedal linked to the computer, and the whole process is done with the feet. Even so, he still did not stop to rest.
"My condition shouldn't have progressed so fast, I was too tired, too anxious every day, and I struggled every day."
Cai Lei's anxiety comes from time. Although death is a word that everyone avoids talking about, for people with frostbite, it is like a dark cloud hanging over their heads all the time, and they have to face it.
Over the years, many of the patients Cai Lei knows have left, and some of them are not much different from normal people when they first enter the patient group, but they soon have limited mobility, get into wheelchairs, and even finally use ventilators.
But drug development is a long cycle, usually taking at least 10 years or more, and the investment is also astronomical, especially for rare disease drugs with a small audience. But for Cai Lei, who was "sentenced to death", and tens of thousands of patients, they did not have that long to wait.
Read scientific papers, contact experts, find investors... At present, Cai Lei's team's work is calculated on an hourly basis, but despite this, the advancement of drug research and development is still difficult due to uncertain investment prospects and other reasons.
In the second half of 2022, Cai Lei opened his own Douyin account, and more than two months later, he began to do the live broadcast of "Icebreaker Station". However, the proceeds of the live broadcast Cai Lei did not include in his own pocket, but took it out to invest in scientific research and drug research and development.
"There is not much time left for me, I am not afraid of death, but who will do these things when I die? So we have been working hard, 365 days without a day off, 16 hours a day. Cai Lei said.
"I may really be Don Quixote"
Nearly 200 years after frostbite was discovered, the cause is still unknown. Now, however, a Chinese patient wants to challenge the end of life, with some comparing Cai's behavior to "riding a bicycle to the moon" and others to "Don Quixote."
"I was surprised when I used such words in an interview, how did I become Quixote? I am such a reliable person, I analyze things so rationally and objectively, there are steps, pay attention to strategy, pay attention to strategy, in the past I also started four companies in a row, how did I become an ethereal, meaningless fighting spirit? But after thinking about it, it makes sense to see it this way in the eyes of others. ”
Cai Lei said that in the past 30 years, top scientists and pharmaceutical companies have spent more than $1 trillion on neurodegenerative diseases, and now almost all of them have failed from the perspective of breakthroughs, "I am a patient, I may only have 1/4 of my life left, or I may die in half a year." People who don't understand the disease often believe in my spirit and think, 'I can definitely succeed'. People who know this disease and do scientific research know that my probability of success in doing this thing may only be 1/1 billion. ”
Doubts come not only from professionals, but even patients and ordinary people will wonder what the real purpose behind Cai Lei's "madness" is. "Is patient information collected for personal gain?" "You have a terminal illness and want to 'cut leeks'?" "Isn't it just trying to save yourself!" ...... For Cai Lei, however, he didn't have time to defend these doubts.
Looking at the work in the past few years, is he really a "Don Quixote" who insists on going his own way?
Cai Lei said that in the past 200 years before the first half of 2020, only 14 drug clinical trials in China were related to ALS, and from the second half of 2020 to now, Cai Lei and his team have promoted more than 100 pipelines of drug research and development through hard work, and the speed has been greatly improved.
"It's hard for people to insist on doing something they don't believe in, since I'm doing it, I must firmly believe that this thing will have a breakthrough in me, it may not save my life, but there will be a new breakthrough."
Will there be a successor?
In order to overcome frostbite, over the years, Cai Lei did not hesitate to recruit high-caliber students from prestigious schools to join his team with high salaries. However, very few people can actually stick to staying.
"These high-caliber students have a good way out, can go to scientific research institutes, medical and health institutions, very stable, have enough social status, come to me, a scientific research self-employed, follow a 'madman' who has no half a life, is there a future?"
Cai Lei knows that in the eyes of smart people, the more "worthless" the work he does is and a "waste of career", so the smarter people are not necessarily persevering. On the contrary, some things require some silliness, to believe and stick to them.
Looking back on his entrepreneurial experience in the past few years after his illness, he laughed and ridiculed himself: "I used to fight very hard, and now I am also very hard, but in the past, I fought for the so-called career, and even the so-called corporate profit, and now the more I fight, the less money, but I feel that what I do is more valuable." ”
Of course, he would prefer to find a successor to keep the business going, because no one knows when his life will end.
However, the stubborn Cai Lei still has the last "bullet" - his own body. He decided to donate his brain tissue and spinal cord tissue after his death, promote the donation of brain tissue and spinal cord tissue in patients with frostbite, and shoot the last "bullet".
Since 2022, under Cai Lei's call, more than 1,000 patients with frostbite and their families have responded positively. Duan Shumin, academician of the Chinese Academy of Sciences and director of the Academic Committee of the National Health and Disease Human Brain Tissue Resource Bank, once described it as an "unprecedented feat".
At the end of the interview, the reporter asked Cai Lei this question: If life really comes to an end, how do you hope the world will evaluate yourself?
He said: "I have no life left, and it doesn't matter how I evaluate me." Most importantly, I hope to pass on my spirit of resistance that I don't give up, because I can help others. ”
Column editor-in-chief: Qin Hong Text editor: Lu Xiaochuan Source of title picture: China News Network
Source: Author: Chinanews.com