"I'm totally comfortable with death."
These are the words of Cai Lei, the former vice president of JD.com, in a TV interview show four years after suffering from frostbite.
His voice became hoarse and sharp due to frostbite, and his tone was a little regretful and sad, but there was no fear of death.
Standing under the plaque "Born to Death, Decisive Battle Gradually Freeze", Cai Lei's eyes were resolute, and he continued word by word:
"Even if I die tomorrow, today I will fight 24 hours a day for the cause of 'frostbite'."
Cai Lei
Desperately terminally ill
Frostbite is a motor neuron disease that causes muscle atrophy and weakness.
In the past, it was easy to carry chopsticks, dress, walk normally and smoothly, and even the ability to take care of one's own life gradually became difficult until he could not even breathe.
At present, there is no specific drug to cure ALS in the world, and the process of disease development can only be delayed by treatment, so ALS has become a terminal disease more terrible than cancer.
Due to the irreversible nature of this lesion, most patients have only 3-5 years to survive after suffering from ALS.
Of course, there are exceptions, the world's most famous and longest-surviving ALS sufferer, Hawking, who survived for 55 years.
But behind this miracle is the meticulous care of top medical staff day and night, and his strong perseverance.
Hawking
Even so, it only delayed the disease for a long time, and there was no real cure.
Therefore, when he learned from the doctor that he was diagnosed with frostbite, Cai Lei subconsciously asked: "Then am I dying?" ”
The doctor quickly brought his hands together, barely leaving a gap, and said to Cai Lei heavily: "Your survival period is still so long." ”
In 2019, Cai Lei was only 41 years old and his career was thriving, but he was diagnosed with frostbite in this golden stage of his life.
The incidence of ALS is only 1.6 per 100,000, but the cure rate is a desperate 0.
It is no exaggeration to say that having frostbite is like planting a time bomb in the body, and no one knows which day it will explode.
After staying in the hospital for a period of time, the doctor provided Cai Lei with a drug that could delay the condition of frostbite - Lirutai.
Can it save lives? Does it make sense to live two or three months longer? What else can I do? Cai Lei thought in his heart.
Before that, Cai Lei was a well-known "life-saver" in the industry, and he won his current wealth and status with his almost lifeless work.
And from the moment he suffered from frostbite, his life seemed to be pressed the pause button, how to go for the rest of the road?
In the hospital, Cai Lei came into contact with many patients from Tiannanhaibei, all of whom were patients with frostbite.
Some of them faltered, uncontrolled, bedridden and dependent on relatives and friends, but they all continued to want to live.
Cai Lei's heart was touched, his life is constantly striving and "desperate", and everything relying on himself is his life creed.
Cai Lei is a typical "small-town problem maker", born in Shangqiu, Henan, and the most practical way to change his fate is to study diligently.
So since the fifth grade, he got up at four or five o'clock every day to run and endorse, quite savage his body, civilized his spirit.
He was admitted to the provincial key middle school, and his grades were often ranked first in the class and even in the whole school, and his classmates
They all see him as a freak and an alien.
Later, he was admitted to the Central University of Finance and Economics and was admitted to the public-funded graduate school with the top three results in the country.
After graduation, Cai Lei first worked as a tax manager at Samsung's China headquarters, and then saw the potential of the Internet and decisively joined JD.com during the entrepreneurial period.
He worked until the wee hours of the morning, showed up at the office earlier than his colleagues in the morning, and worked overtime even on weekends.
"China's new economy leader", "China's first electronic invoice person", "Jingdong vice president"...
He not only became famous in the industry, but also gained the love of his life at the age of 40.
Just reached middle age, his family became a business, and his answers to the test papers in the first half of his life were perfect.
But one day in 2018, Cai Lei, who was working, suddenly felt a twitch in the muscles of his left arm, and his nightmare began.
At first, Cai Lei did not pay attention to it, but until there were more and more abnormalities in his body, he finally realized that something was wrong.
From 2018 to 2019, he had six physical exams until the last time the doctor determined the result for him: frostbite.
Cai Lei was unwilling, and after two months of silence, he decided to work hard again for himself and for all frostbite patients.
Get ready to tackle frostbite
"My conditions, abilities, and resources are stronger than many patients, so let's leave me alone, the purpose is very simple, our goal is to overcome 'frostbite'."
Cai Lei looked relaxed and indifferent when he said this, but this road was actually extremely difficult and slow.
At first, he didn't know anything about frostbite, and he was cheated out of a large amount of money by criminals.
This experience made Cai Lei more determined to carry this matter to the end.
In the mood of "emergency illness and indiscriminate treatment", even he will be deceived, not to mention those ordinary patients?
After communicating with a large number of patients, Cai Lei learned that there was no real case of frostbite patients in China with cerebrospinal cord tissue samples, and the basic research was very simple.
His attending doctor, Professor Fan, has been studying ALS for more than 30 years, but has encountered only 3,000 cases.
In order to change this situation, Cai Lei, who started with the Internet, quickly built the world's largest big data platform for frostbite patients.
Tens of thousands of ALS patients are gathered here, which can be directly connected to doctors, pharmaceutical companies and investors.
However, his venture is extraordinary, and it is difficult for the project to attract financing until the specific drug is developed.
Over the past three decades, trillions of dollars have been spent around the world on drug development to address neurodegenerative diseases, but without exception, they have failed.
In August 2021, Cai Lei held an "ice bucket challenge" in China to promote frostbite.
When the bucket of ice water splashed down from the top of his head, Cai Lei felt a bone-chilling coldness, and what made his heart even cooler was that the funds raised by this event were really shabby.
In addition to his own 1 million donations, the remaining bundits and pieces received less than 800,000 donations, which is a drop in the bucket for drug research and development.
In order to overcome the problem of funds, Cai Lei sold real estate, sold stocks, and set up a charitable trust with tens of millions of funds.
So that after he falls, the work of overcoming frostbite can continue.
In order to expand the society's attention to frostbite and raise funds for research and development, he pulled his wife who graduated from Peking University and founded the live broadcast room of "Cai Lei Icebreaker Station" with himself, and brought goods live with his wife.
His body is getting weaker and weaker, his upper limbs have completely lost their function, and he is no longer able to dress and eat on his own.
The last examination paper in his life seems to be almost time to hand in the papers, but Cai Lei's whole state is still very positive.
Shoot the last bullet
After falling ill, Cai Lei still did not change his state of "workaholic", and the energy and workload invested were much higher than many normal people.
As he said, if this thing is compared to a 100-meter race, then he keeps sprinting.
With his body able to sustain himself, Cai Lei still maintains 16 hours of high-intensity work every day, even if he knows that this will speed up his countdown.
But when he thought of the more than 60 patients dying in despair every day, and the social responsibility he beared, he felt that it was worth doing.
Many friends and even patients feel that Cai Lei is doing useless work and is "riding a bicycle to the moon".
Some people feel that Cai Lei is so desperate to save his own life.
Yes and no.
Cai Lei is very clear that the development of specific drugs for ALS is very difficult to see, so at the beginning of the establishment of this project, Cai Lei did it with the purpose of promoting the research process of ALS.
Like thousands of people with frostbite, he certainly wants to live, so he will do his best to work hard to achieve this ideal.
In order to encourage patients, Cai Lei wrote the book "Believe" on his mental journey from confusion and depression at the beginning of his illness, and then to the courage to launch a counterattack against frostbite.
He changed his screen name to "Stone", hoping to break through the sky and sneak out a Monkey King to solve all the problems that could not be overcome.
Idealists are romantic because after seeing the cruelty of reality, they can still have good expectations for the future, and will never be attracted by "resignation" and "compromise".
If it is only to prolong his life, Cai Lei can use his wealth to let others give him meticulous conditioning and care.
This will definitely live longer than overdrawing the remaining time that you are already insufficient and constantly accelerating the progress of ALS drug research.
In 2023, in the fourth year of Cai Lei's diagnosis of frostbite, he has almost lost his ability to take care of himself, and even speaking has become very difficult.
Seriously ill, he carries too many negative emotions and occasionally shows his irritable side.
The 4-year-old son heard that his time was running out of nowhere, and Cai Lei couldn't help but yell at the child.
Looking at the crying child, Cai Lei's heart hurt like a knife, such pain should not be borne by a child of this age.
The originally harmonious and happy family suffered too much pressure because of this disease, and Cai Lei's mother also suffered from depression.
The more he sees the harm of frostbite to the family, the more urgent Cai Lei is to develop and achieve results as soon as possible.
In the interview, he told reporters with difficulty: "Maybe no matter how hard I try to succeed, it will not belong to me, but I will 'shoot the last bullet'."
With the aggravation of his condition, Cai Lei has a hunch that his time may be running out, and his biggest wish at present is that the drug research and development of frostbite can still advance at a high speed after leaving.
There is only one kind of heroism in the world, that is, to see the truth of life and still maintain love.
I believe that Cai Lei's story of not bowing to the disease and having the courage to fight will move more people to pay attention to and support patients with frostbite, and strive for a trace of life for those with frostbite!
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