The father who saved his children by self-made medicine: Learn from foreign research on pharmaceuticals; The biggest difficulty is loneliness
Background Story
This is a true story that happened in China last year and caused an uproar in society. The protagonist’s child has Menkes syndrome, but there are no effective relief or treatment drugs and programs in the Chinese pharmaceutical market. Many patients obtain copper histidine by purchasing abroad. But going abroad during the pandemic has become almost impossible. In order to maintain the child’s life, the protagonist chooses to study and develop copper histidine, and decides to insist on developing effective treatment methods and drugs in the later stage.
(Video: Chinese father makes own medicine in desperate bid to treat son’s fatal genetic disease, South China Morning Post)
Interview | Xu Wei, the father who saved his children by his own medicine: Translating foreign papers and research on pharmaceuticals. The biggest difficulty is loneliness…
Xu Wei said that he would still persevere, just as his 5-year-old eldest daughter said, “As long as we work hard, we will definitely be able to cure my brother’s illness.”
“If your son is seriously ill, would you take the risk of choosing to make your own medicine?”
On September 29, Xu Wei published a post in response to self-made medicine.
Xu Wei is 30 years old this year, and his son Xu Haoyang is 2 years old this year. He is a patient with the inherited copper deficiency disease Menkes syndrome.
Menkes, also known as curly hair syndrome, is a rare congenital disorder of copper metabolism. Children with typical Menkes disease are normal at birth, usually develop severe neurological degeneration at 2 to 4 months of age, and usually die before the age of 3 years.
In order to treat this rare disease for his son, Xu Wei, who only has a high school degree, read a lot of foreign research papers, turned the utility room at home into a laboratory, and developed his own pharmaceutical-grade compounds without the support.
On September 30, Xu Wei admitted in an interview that the process of self-medicating was very tortuous, because there was no one to support him, and the biggest difficulty he faced was loneliness. In fact, self-medication does not improve the child much, it can only prolong his life and alleviate the current situation.
Xu Wei said that he would still persevere, just as his 5-year-old eldest daughter said, “As long as we work hard, we will definitely be able to cure my brother’s illness.”
(The lab is growing stem cells. Photo courtesy of the interviewee)
“Converted the utility room at home into a laboratory”
Q: How did you find out that your child suffers from the inherited copper deficiency disorder Menkes syndrome (hereinafter referred to as Menkes)?
Xu Wei: When the child was about 6 months old, I noticed that his growth and development were relatively slow, and he could neither raise his head nor turn over.
I took him to the hospital for a check-up, and the doctor diagnosed the child with Menkes based on the genetic report. Before the diagnosis, the doctor asked me to prepare myself mentally and check the disease online. I found that the mortality rate of Menkes children was close to 100% before the age of three, and I was blinded at that time. I asked the doctor how to treat it. The doctor said that we can only go home and wait. If the child has any symptoms, we will treat it symptomatically.
Q: Why did the idea of self-pharmaceuticals arise?
Xu Wei: In the first month after my child’s diagnosis, I took him to Beijing to receive micronutrient supplementation with cocktail therapy, but it didn’t work. During that time, I was also reading foreign medical papers and learned that copper histidine supplementation is often used to treat Menkes internationally, but for various reasons, this medicine has not been introduced into China.
Usually, parents will go abroad to get medicine, but I have no way to buy it during the epidemic. I also considered whether I could find a pharmaceutical company to help me make it, but I am a businessman. From a commercial point of view, it is impossible for a pharmaceutical company to help us develop this drug. It took a long time to develop this drug, but its audience was small. So I decided to rely on myself.
Q: What is the process of self-pharmaceuticals?
Xu Wei: I have read relevant papers before, which mentioned the method and process of preparing this medicine. I couldn’t understand it at first. Then I translated word by word. After understanding the meaning, I found out that this medicine was made. It’s not really that complicated. This drug is to synthesize a compound, but to enter the market, it has to pass many tests, and the process is very complicated.
But I don’t want to put my own medicine on the market, I just want to treat my child’s disease. The formula is provided in the paper, so I didn’t spend much time configuring the medicine. As for the principle of this medicine, I only gradually understood it later. At that time, I was in a hurry to prepare the medicine so that it could be used on children.
I started a tech company before and used the company to buy raw materials because the raw materials for this drug may not be sold to individuals. At that time, I didn’t know where to buy it. I searched for various phone numbers on Baidu every day and called them one by one.
I turned a utility room at home into a laboratory. It was very simple at first, and the environment was not sterile, but at least cells could be cultured.
(Stem cells cultured by Xu Wei. Photo courtesy of the interviewee)
“The biggest difficulty in self-medication is loneliness”
Q: How long have you been groping before you dare to use medicine on your child?
Xu Wei: It took about a month for medicine, and then it was used on children two weeks later. I tried it on rabbits first, then on myself, and finally on kids.
Q: What is the effect of self-made medicine on children?
Xu Wei: The first time I didn’t dare to use too much, I only used 0.2ml, and after a week of use, I went for a re-examination. The results of the examination did not change, and I was very frustrated. But after thinking about it, I felt that there was no problem with this medicine, so I dared to add 0.5 ml to him, and then went for a test a week later, and the child’s serum and ceruloplasmin returned to normal. But the child’s condition hasn’t improved much, it’s just to prolong his life and ease the current situation. Now the child can only lie down and only laugh and move.
Q: What occupation were you engaged in at the time? Is it related to drugs?
Xu Wei: I have a high school degree. I do e-commerce on Taobao. I sell products such as electrical sockets, which have nothing to do with drugs.
Q: What do people around you think about your self-made medicine?
Xu Wei: When I first proposed to convert the utility room into a laboratory, my family was very opposed to it, and they felt that such tossing would affect life. People around you say that there are no experts and professors in China who can develop this kind of medicine. How can you do it yourself? Your thinking is too naive.
Q: What is the biggest difficulty in the self-pharmaceutical process?
Xu Wei: The biggest difficulty is loneliness.
I am the only one who insists on this matter, and no one supports me. Even if I take this medicine, I don’t know if it can cure my child’s disease. And as my understanding of this disease deepened, I became more and more aware that it is very difficult to cure this disease.
Once in a hospital in Beijing, I was going to Shanghai to see the laboratory of a pharmaceutical factory. When I bought the plane ticket, all my family members called to persuade me. The child’s mother said that I had been deceived. I was so angry that I went to the airport with my bag. The flight was late that day, and I was alone at the airport, feeling lonely.
When I was going to the hospital for stem cell therapy for my child, the child’s mother wanted to divorce me. That day, I was driving alone with my child in my arms, and the child couldn’t sit still. Later, I had to find a Didi driver to help me drive, and I came to hold the child. I felt that if I didn’t want this child at all, no one would want him.
Q: What was your life like at that time? Has your work been affected?
Xu Wei: My work schedule is very chaotic and irregular. Sometimes I can’t understand the paper at all. I fall asleep while I look at it, and I continue to read it when I wake up. My partner is taking care of the company. I gradually devote myself to my children. I have no time to manage my work. Now I have some arrears, but it is not enough to eat.
(Xu Haoyang, a child of Menkes. Photo courtesy of the interviewee)
“As long as we work hard, we will definitely be able to cure my brother’s illness”
Q: Have you considered the legal risks of self-pharmaceuticals?
Xu Wei: I have considered it, but there is no way. This medicine can relieve the child’s condition, but it is not compliant, so I don’t think it is a medicine, but a compound. The doctor is also very cautious and worried about the safety of the self-made medicine, but after I made it, it was effective for the child, and the doctor did not say anything.
Q: What’s your eldest daughter’s attitude towards her brother’s illness? Do you think you prefer your brother?
Xu Wei: My eldest daughter is five years old and is in kindergarten. She sometimes acts like a spoiled child, saying that we prefer my brother, but she also understands that his brother is sick and we need more energy and time to take care of him. Self-made medicine needs rabbits for experiments. My daughter accompanies me to buy them. She asked me if I bought rabbits to treat my brother, and I said yes. She said firmly, “As long as we work hard, our brother’s illness will be cured.”
Q: Are there other parents who want to buy your own medicine?
Xu Wei: I don’t dare to sell it. At most, I tell them how to rent a laboratory and how to synthesize drugs.
Q: What is your next goal?
Xu Wei: The second goal is gene therapy. Menkes is a genetic mutation disease. The vectors of gene drugs are all modified viruses. I am very worried about the rejection of my children. Compared with gene drugs, gene editing is a more thorough treatment, so at the same time I am still developing gene-editing tools, but gene editing is an insurmountable mountain.
I now hope that the experts can help us answer some technical questions and provide my “homemade medicine” to the parents of other Menkes patients in a legal and compliant way as soon as possible.
(Source: Beijing News, reporter Peng Jingtao Ma Yifei, Edited by Zuo Yanyan, Proofreading Wu Xingfa)
