At 20:30 on December 31, 2021, Luo Zhenyu's "Friend of Time" New Year's Eve speech arrived as scheduled.
Unlike previous years, this New Year's Eve speech was held for the first time. At the Chengdu Wuliangye Chengdu Financial City Performing Arts Center, Luo Zhenyu will face 12,000 empty seats alone and give a special New Year's Eve speech with the greatest effort.
Luo Fat once made a big wish: the New Year's Eve speech would be held for twenty consecutive years. This year is the seventh and most special one, Luo Fat faced 12,000 empty seats, with 53 good stories, to tell you "the original can still do this".
Luo Fat's first story made many people cry, a father, touched the whole network, although his approach is not encouraged, but his heavy love for the child makes people feel heavy, called by netizens: the realistic version of "I am not a medicine god".
There is a young man in Kunming, his name is Xu Wei, who runs a Taobao shop. Two years ago, he was 28 years old, and his second child was born, and the family was very happy.
When the child was half a year old, he found a disease, a rare disease brought about by genetic defects, and the body could not absorb copper ions. Doctors say that children with this disease have a mortality rate of nearly 100% before the age of three. This is a great misfortune.
Put yourself in the shoes of a parent, what should you do when you encounter such a thing?
Is it sadness and despair? Or do you go around seeking medical treatment? Or look for various folk remedies? I reckon a lot of people can do it. However, Xu Wei faced a more difficult situation, and there was no cure for this disease. Even the medicines to relieve the symptoms are not available on the domestic market at present.
Xu Wei told reporters in an interview that ATP7A is responsible for the operation of trace elements such as copper throughout the body, and once a genetic mutation occurs, the child's body cannot absorb such trace elements from food, which in turn affects the development of the whole body and brain. In the patient group, he learned that there are currently only thirty or forty similar patients in the country. According to statistics from all over the world, the mortality rate of this disease within 3 years of age is close to 99%. At present, there are no treatable drugs in the country.
Internationally, copper supplementation with histidine is often used as a symptomatic treatment for Menkes. For children, although copper histidine can only alleviate symptoms, it seems to be the only hope for prolonging the child's life.
What makes people even more devastated is that the sudden outbreak of the new crown epidemic has cut off the channels for overseas medical treatment and medicine. Xu Wei, who only has a high school education, has only 2 roads:
1. Get expired drugs from sick friends.
But the medicine was too few and soon it was not enough.
2. Contact domestic pharmaceutical companies for separate customization.
He far underestimated the difficulty of finding a pharmaceutical company to make a separate drug, and no pharmaceutical company would make a separate drug for a patient.
For the sake of children, Xu Wei looked up the information from scratch, used the translation software to translate the literature of a medical term and a medical term, and read five or six hundred papers with amazing perseverance for more than a month. Because the number of patients is too small, the market for rare disease drugs is limited, and it is not profitable to do so, and few pharmaceutical companies are willing to develop and produce. Xu Wei decided that this matter could only be done by himself.
△ Xu Wei wrote down the process of preparing copper histidine and the amount of notes.
Xu Wei told reporters: At that time, my schedule was very chaotic, there was no law, sometimes the paper could not be understood at all, I fell asleep when I looked at it, and when I woke up, I continued to read. The company was in the care of my partner, and I gradually threw myself into the children, I didn't have time to take care of the work, and now I had some arrears, but not to the point of not being able to eat.
Xu Wei found that there was a shared laboratory in a building, and the cost of site labor was rented for more than 14,000 yuan a day, and it could synthesize histidine copper in two days, with a shelf life of 56 days.
In order to minimize the cost, he eventually purchased all the domestic equipment in his utility room and built a simple dispensing room. Everything adds up to less than 20,000, far less than the 14,000/day shared lab.
△ Xu Wei's simple laboratory, converted from a utility room
Pharmaceuticals are not simple, no one believes that he can succeed, his wife does not believe, his friends do not believe, someone reminds him that it is too dangerous to do so, and he is not going to die; someone reminds him that he may break the law. But he didn't have time to think about it, and the child couldn't do without medicine.
Xu Wei said that when he first went to the drug, he first bought raw materials according to the methods mentioned in foreign papers, sent them to a laboratory in Shanghai, and then participated in the preparation of copper histidine on August 18, 2020. At that time, I did not know that I had to pass the sterility test, etc., but let the laboratory maintain a sterile state during the preparation process. After the end, he took the "medicine" back to Yunnan.
To ensure a safe range of doses. Xu Wei bought three small rabbits for experiments, but the dose of injection was too large, and the rabbit died. "Then it was replaced by a big rabbit, and this time it was fine." But I still did not dare to inject the child, so I first injected myself and observed that there was no abnormality in the feeling for three days before injecting the child. ”
Now, at 11 o'clock every night, when copper ions are most likely to penetrate the blood-brain barrier, Xu Haoyang, who is 2 years and 3 months old, is held on his lap by his grandmother, and the blue liquid gradually pushes into the body. Since September 2020, injections have been repeated more than 300 times since pharmaceuticals.
While studying self-pharmaceuticals, Xu Wei picked up textbooks and enrolled in the adult college entrance examination, eager to go to the real laboratory and learn about all aspects of his son's disease, "especially molecular biology." He hopes that systematic learning can lay the foundation for future gene therapy for his son's disease.
△ University textbooks for biochemical medicine purchased by Xu Wei.
However, Xu Wei's efforts can only be maintained at present, and cannot be cured. The difference between a 2-year-old child and a 6-month-old child is not much, but what comforts him the most is the occasional smile of the child, which is already a miracle for the doctor.
Xu Wei was praised by netizens for completing the impossible task, and the topic of #He is not a medicine god but just a father has also rushed to the hot search.
Xu Wei said: I am not a medicine god, I am just a father, I am just more stubborn, I just want to rob my son with God.
After listening to the story of this father, netizens were full of emotions. Hit by the father's love of the mountain. Of course, this fight is still ongoing, for example, the child still needs gene therapy, which is by no means a problem that Xu Wei can complete in his own simple laboratory, but Luo Fat said in his New Year's Eve speech: Xu Wei, respect you are a man!
In xu wei's story, you will find that he relied on the personal will of his father's love as a mountain, and he pushed forward the ancient story of Yugong moving the mountain a small step forward, which has contemporary significance.
Luo Fat also mentioned in his speech that in 2021, many people have an easy time. This year, we are all immersed in various diseases and disasters.
Everyone may be more or less panicked, not only you panic, in fact, Luo Fat is also panicked.
Because of the epidemic, this year's New Year's Eve speech did not have a live audience for the first time. The 12,000 seats in front of me were all empty. When I received the news, there were only 90 hours left before the New Year's Eve.
Thankfully, many years ago, when I watched a movie, there was a line that I remembered to this day: "Just do it." No, I'll think of another way. ”
Every child is a gift from Heaven, in the eyes of parents, children are like a crystal ball in their hands, every parent is particularly careful, whether it is an illness or an accident, it is a devastating blow to a family.
Someone in the circle of friends asked, how easy is it to destroy a pair of parents? There was a mother at the bottom who answered to my heart, she said that as long as the child has a disease, it is enough.
School district housing? Cow baby? Schools? If the child is not healthy, these are all waste, I do not ask the child to be perfect, do not ask her to fight for my face, and do not have to help me retire. I only hope that she can be safe, healthy and healthy, and a stable life.
To give your child good food and drink, buy a lot of brand-name clothes or toys, it is better to buy her an insurance to be real and at ease!
Whether we will get sick or not is a matter of God, we can't control accidents and diseases! Treating the sick and saving people is the doctor's business, but whether there is money to cure is what our parents should consider!
If your child has not yet bought insurance, then please think deeply, why our children do not, is it the negligence of the mother or the father who is lucky? Please establish a protection plan for your child as soon as possible. Because it is much easier to save 500,000 than to earn 500,000.
In the hit drama "Little Joy", when the mother (Haiqing) wants to buy insurance for the two children, but the father (Huang Lei) will not let:
Later, under the bitter insistence of the mother, the insurance was still bought:
Children from stumbling to steady steps, children have a long way to go, parents may not be able to care for their children for a lifetime, but they can use insurance to convey never-ending love, help children safely survive every difficult time is what each of us as parents must do.