Li Sheng, a young boy of only 4 years old, suffered from a rare blood disease in the world. He had crocodile skin-like skin and lumps all over his body, struggling on the edge of life and death. His medical treatment for life is not only a medical problem for the diagnosis of rare diseases, but also for people to pay attention to social problems such as social assistance, rare disease treatment, and medical security. The first chemotherapy: 130,000, at noon on November 14, the 715 room at the end of the pediatric blood ward corridor of the gliding area of Shengjing Hospital affiliated to the Medical University, just finished the first chemotherapy letter, and was crying on the bed: "I want to eat the red sausage!" He shouted, and he had just turned away from the ghost gate. Wang Huan, director of the Pediatric Hematology Department, said that during the chemotherapy, there was a serious intestinal infection in the letter. The situation was very bad. "We are all worried that he will not be able to pass. The child is really strong." Wang Huan secretly told reporters, A letter to a child who received chemotherapy at the same time almost did not go past and left. "My son has rarely cried since he was ill. This time it is too painful." The letter Ma Mu Xiaojie said that he had not eaten for more than ten days, relying on injection of nutrient solution. In order to prevent re-infection, his only food every day is water, and he can't swallow it in his stomach. He can only spit it out in his mouth. It is impossible to eat the red sausage. From the hospitalization on October 9 to the end of the first chemotherapy, a total of 130,000 was spent. "In the days when the child was infected, the treatment fee for one day was eight or nine thousand." Even so, seeing the son who can cry now, Mu Xiaojie is still fortunate. The letter in front of me, face, neck, limbs, torso, all over a layer of gray-brown, uneven bumps, like wearing a swollen crocodile skin. "He didn't get a skin disease, but an acute single. Nuclear cell leukemia." Wang Huan said. The name of the diagnosis was: 140,000. Just to know the name of the disease, the letter book took 140,000. Mu Xiaojie said that in November 2009, she took a letter to Dongguan to see the letter from her father, Li Wenrui. Soon after, there were several small packets similar to mosquito bites on the body of the letter. They were flesh-colored and did not hurt. They didn't care. Subsequently, the packet began to grow, become larger, and develop to the whole body. The couple took the children to and visited many well-known hospitals in four or five cities, and even consulted the academicians. They had made three pathological sections, and the diagnosis of each hospital was different. The savings of 140,000 were quickly spent, but they still don't know what the child is getting, and the condition of the letter has been increasing during this period. In July this year, Li Wenrui had to give up his job in Dongguan, lead his wife and children back to their hometown, and continue to seek medical treatment. On October 9, the letter was sent to Shengjing Hospital. "We have never seen such a case." Zhang Jihong, director of the Blood Research Office, said that doctors worked overtime to make pathological smears and found that nearly 40% of the abnormal cells in the bone marrow of the letter were indistinguishable. After a cell examination and a large number of consultations, the diagnosis letter was obtained from acute monocytic leukemia. This type of case is rare, and it is even rarer that the symptoms of the letter appear first on the body surface and then in the bone marrow. "The incidence rate has not been counted, and less than one in 200,000 is affirmative." The price of medical treatment: 400,000, the facts also prove the diagnosis of doctors. After the first chemotherapy, the condition of the letter has improved. The range of "crocodile skin" on the face and limbs gradually narrowed, and the color also faded. Some "hard skin" fell off like a knot, and the bone marrow image also showed that the malignant cells were significantly reduced, and the proliferation was in a trough. According to the doctor's plan, the letter will undergo three or four chemotherapy treatments, and bone marrow transplantation will still have a chance to cure. If there is no accident, the total cost will be around 400,000. The Li Wenrui couple are working hard on this number. The letter was inseparable from the mother one day. Since he was hospitalized, Li Wenrui went out to raise money every day. Manage relatives, borrow friends, find old classmates, find media... "In short, I have tried everything." Mu Xiaojie said that her husband’s classmates are now planning to send their sons to the streets to raise funds. In order to save more than 400 yuan per month, they even rented out their own homes. The family of three and grandfather and grandma rented a small house of more than 40 square meters. Medical insurance reimbursement: 0, "I really regret it, did not give the child medical insurance." Mu Xiaojie has been complaining about himself. Mu Xiaojie is a person, and the letter was born and fell into an account. "There is no such thing in my mind, and no one mentions the child to medical insurance." After the letter was hospitalized, Mu Xiaojie only listened to the doctor and said that as long as he can pay tens of dollars a year, he can participate in the medical insurance of the city residents, 40% The treatment fee can be reimbursed, which will help the treatment of the letter! Now, regret it late. Good-hearted people donated: 60,000. After the news was broadcast on TV, many good people extended their help. Less than one hundred and two hundred, more than three or five thousand, a couple did not leave a name directly to 10,000, there are more than 70 donations before and after, sent to Mu Xiaojie, or directly into the letter of the hospital account . "There are more than 60,000 in total, thank you!" Although in front of the total treatment fee, 60,000 is still not enough, but finally relieved the urgent need, Mu Xiaojie was particularly moved: "It's still a lot of people!" However, the program broadcasts one Two weeks later, as the degree of attention diminished, fewer people came to donate. Mu Xiaojie realized that it is not enough to support treatment by simply looking for the media and making donations by good people. Difficult to apply: 30,000, Li Wenrui and the couple thought of the Red Cross. I heard that there is a "small" fund dedicated to helping children with leukemia in poor families. The amount of assistance is 30,000. The account of the letter can be applied to the Red Cross. The application conditions must be “poor families” with proof of poverty insurance or street poverty. This has also become a heart disease of Mu Xiaojie. Before the child fell ill, there were three or four thousand in the family of three, not counting "poverty." But the child's illness is cured today, they are really poor. Now, can the street give this proof, can the Red Cross be approved? Mu Xiaojie has no bottom. Help: No matter how much money, on November 17, the reporter went to visit the letter again, and the letter looked at the TV program on the TV channel, and was learning to speak English words. In the face of serious illness, the letter has a strength that is far beyond 4 children, and the thirst forhope. Because of his son's illness, 31's Mu Xiaojie's hair is already white. The letter reminded the mother of the white hair in front of her: "Mom, dye it, dye it into color." He knows that he can't eat now, let her use the pen to pull down a long list of food: little girl , seaweed, biscuits... "When I am fine, I have to eat it again." Mu Xiaojie said that although his son is small, he is particularly sensible. The lumps on the body are itchy, and the child can't help but scratch, afraid to infect her and keep watching. One time I was too tired to fall asleep. When I woke up, I saw the child squatting on the back of the bed. She said that she would not want to wake her mother... "I will not give up at any time, let alone the doctor said that he still has hope of healing!" Mu Xiaojie's tone is full of persistence. The reporter of the newspaper, Ye Qing [news extension] The rare disease treatment system is missing, suffering from rare diseases, the letter is only 140,000 yuan for diagnosis, and the later treatment is also facing higher medical expenses than the average patient. It also exposed the lack of a rare disease treatment system. A doctor who has studied abroad for many years told reporters that more than 30 countries and regions, including Singapore, already have their own special laws and regulations on rare diseases, and they are funded by the government or specialized agencies in terms of treatment costs and drugs. However, there is still no conclusion on the criteria for the identification of rare diseases, and rescue measures are even more difficult to talk about.