In the journey of life, although birth, old age, sickness and death are regarded as natural laws, when this heaviness suddenly befalls a family, especially young children, the pain and helplessness are often unbearable.
In Kunming in 2020, a story about love and courage quietly unfolded, little Xu Haoyang, a half-year-old toddler who had just learned to explore the world, was unfortunately diagnosed with a rare disease, and the doctor's words were like a bolt from the blue, predicting that his life may not be able to cross the threshold of three years old.
Faced with this cruel reality, Xiao Haoyang's father did not choose to sink or give up, but made a decision that moved the whole world.
Instead of being consumed by despair, he turned his grief into strength and resolutely embarked on a journey to find a way to survive for his son, knowing that the boundaries of traditional medicine may be difficult to break through, but love and perseverance can create miracles.
So, the father decided to go into battle himself, use all possible resources, study, research, and vow to develop a special medicine for his child that can fight the disease, and in the end did he succeed?
In June 2019, Xu Wei ushered in another new member of the family, the birth of the youngest son Xu Haoyang, and his daughter's name made up a warm "good" word, which made countless young families envious, and Xu Wei's family was also immersed in unprecedented happiness and joy.
However, this happiness did not last long, when Hao Yang was six months old, Xu Wei and his wife began to notice the obvious lag in the growth and development of their children, children of the same age had already learned to roll over and play, but Hao Yang even looked up such a simple action as it was extremely difficult.
Anxious, they quickly took the child to the local hospital in Kunming for a comprehensive examination, and although the results of the routine physical examination were normal, the doctor's intuition told them that things were not simple.
At the doctor's suggestion, they underwent genetic testing, and the results were like a bolt from the blue - Hao Yang was diagnosed with a rare disease called Menkes.
Knowing that Hao Yang was the first case of Menkes disease in Yunnan Province, the news was like a boulder pressing on the top, and the hearts of Xu Wei and his wife sank to the bottom.
Menkes' disease, a rare X-linked recessive genetic disease, is like a cold curse, due to the mutation of the ATP7A gene, which blocks the normal absorption of copper, resulting in impaired function of a series of key enzymes, and then leading to multisystem failure throughout the body.
In the face of this sudden disaster, Xu Wei and his wife were unwilling to accept the ruthless arrangement of fate, and they firmly believed that there might be a possibility of misdiagnosis, so with a faint hope, they embarked on the journey to Beijing overnight.
There, they pinned their hopes on the country's top medical technology and equipment to conduct genetic testing for Haoyang again, but the cruel reality shattered their illusions again, and the results were still heartbreaking.
Despite the slim hope, the doctor's suggestion of a cocktail therapy was a glimmer of light that illuminated their path, and they decided to give it a go, despite knowing that the effect of the treatment was unknown.
However, after more than a month of treatment, Haoyang's small body endured the pain of countless needle punctures, and his body was covered with dense needle holes, like a thousand holes, but his condition did not improve in the slightest, in the face of this cruel reality, Xu Wei and his wife had to tearfully take their children on the way home, their hearts were full of helplessness and despair.
Xu Wei was faced with the desperate situation of his son's rare illness and found that only a few hundred people in the world were suffering from the disease, so no pharmaceutical company was willing to risk investing in the research and development of an essential drug, copper histidine.
Pharmaceutical companies believe that the patient population is too small for a promising return on investment, due to commercial considerations. However, Xu Wei, as a father, could not give up any hope of saving his son.
He resolutely embarked on the difficult path of finding the production of copper histidine, but the reality poured cold water on him: high R&D costs, long R&D cycles, and his personal non-professional background made this path almost impossible.
The opposition of his family came and went, especially the worries and incomprehension of his wife and father, which put Xu Wei under tremendous psychological pressure.
But Xu Wei has no way out in his heart, he firmly believes that only by trying by himself can he win a glimmer of life for his son, so he desperately embarked on the journey of self-made copper histidine, determined to use his own hands to open up a way for his son to live.
Xu Wei was originally an ordinary person who had no intersection with the medical world, and in order to save his sick son, he resolutely stepped into the unknown field of scientific research.
He put down his business, started with basic chemistry knowledge, and greedily absorbed all the information related to copper histidine like a sponge.
Working day and night, he shuttled between chemistry books and English literature, using translation software to break down language barriers word by word, and finally mastered the key knowledge to make this rare drug.
Faced with the lack of experimental conditions, Xu Wei did not flinch, he relied on his enthusiasm, ran around to raise raw materials, and even did not hesitate to rent expensive commercial laboratories, just for that glimmer of hope.
In the course of the experiment, failures and setbacks followed, but he did not give up, but learned from each failure, constantly adjusted and optimized, and when the first experiment on rabbits was successful, he saw the dawn of hope.
In order to ensure the safety of the drug, Xu Wei did not hesitate to test the drug and take the risk with his wife, and this courage and determination finally brought about the improvement of his son's condition, and also made the family gradually change from initial doubts and opposition to support and understanding.
Faced with high laboratory costs, Xu Wei made the astonishing decision to mortgage his property and vehicle to transform his family's utility room into a simple but loving sterile laboratory to continue his pharmaceutical journey.
In his humble but hopeful laboratory, Xu Wei not only consolidated the production of copper histidine, but also worked with another parent who also shared a passion for medicine to successfully develop another drug that has a remarkable effect on Menkes' disease, copper ilismo.
These two major achievements not only strengthened the sails for his son Xiao Haoyang's boat of life, but also made him a beam of light in the patient community.
With the wide dissemination of Xu Wei's deeds, all walks of life cannot help but have doubts about the legitimacy of his actions while admiring his father's love like a mountain.
In this regard, the clear response of the Kunming Municipal Health Supervision Commission is like a needle in the sea, justifying Xu Wei's persistence and efforts: as long as he does not aim for profit and does not push the drug to the market, his behavior is legal.
In the face of the urgent request for help from the patient's family, although Xu Wei felt powerless, he adhered to his principles and did not want to let the path of his beloved son become the source of risk for others, and he longed for a legal channel in the future to pass on this love to more families in need.
Xu Wei's journey did not stop with the victory in front of him, and he knew that gene therapy was the ultimate path to recovery for Menkes disease.
To this end, he self-motivated and self-taught, starting from an adult college and moving towards a higher academic hall, vowing to delve into the root cause of his son's illness.
Along the way, he is no longer alone, and the help of many companies, hospitals and medical experts has illuminated his path forward like stars.
After countless days and nights of hard work, Xu Wei seemed to be reborn, and finally developed the bottle of blue elixir that carried hope.
Faced with unknown challenges, he first chose a rabbit with a similar gene to a human as the test subject, but the first attempt ended in failure, and the death of the rabbit made him fall into deep self-blame and despair.
But the power of his father's love made him quickly cheer up, he re-sorted the data, adjusted the formula, and even did not hesitate to test the medicine himself, taking risks with his wife, fortunately, none of them had any abnormalities, which gave Xu Wei unprecedented confidence.
Finally, that decisive moment came, Xu Wei slowly injected the medicine into his son Xiao Haoyang's body, as time went by, Xiao Haoyang's smile was still bright, and his body miraculously recovered his health, and the results of the hospital's examination were even more exciting, and the indicators tended to be normal, which means that Xu Wei's homemade medicine was really successful!
However, the joy of success did not stop Xu Wei, he knew that in order to completely cure Xiao Haoyang, he still needed gene therapy, in the face of the problem of production, he bravely asked the society for help, the attention of the media let more people know his story, but also gave him the opportunity to cooperate with a gene company in Guangzhou.
In the summer of 2022, Xiao Haoyang not only ushered in his third birthday, but also became the world's first patient with Menkes syndrome who lived past the age of 3, creating a miracle of life.
In the face of praise from the outside world, Xu Wei has always remained humble, insisting that he is not a "god of medicine", but just a father who works tirelessly to save his son.
His story once again proves the greatness and selflessness of fatherly love, and also makes us believe that as long as there is love in the heart, it is possible to create miracles.