My name is Yu Hongjun, 38 years old, from Taihe County, Anhui Province. I have ankylosing spondylitis, a systemic inflammatory disease that mainly violates the sacroiliac joint and spine. After my illness, most of the burden of the family fell on my wife. She worked hard and complained, and she never abandoned me, which made me understand what is the true meaning of love.
The picture shows me with my wife and daughter
My wife and I met in 2001, when we both worked in Tianjin, and we both worked very close together. By chance, my wife and I met through an event organized by a friend, and after contact, we found out that we were fellow countrymen.
Fellow countrymen see fellow countrymen, and two tears flow. Being able to meet people in a different place with yourself is really the fate arranged by God. I was attracted by my wife's cheerful optimism, so I began a passionate pursuit of her. Every time after work, I always look for an opportunity to meet her at the factory next door and create an opportunity for the two to meet. And so it went, and we fell in love. At the end of 2001, we both got married and gave birth to our eldest son the following year.
The picture shows my wife
At that time, my wife was gentle and considerate, my son was lively and lovely, I was healthy, and the family's life was very sweet. It was one of the few peaceful, happy times in our family. In 2011, I suddenly had back pain. The wife was particularly worried and hurriedly dragged me to the hospital for examination. Later we learned that I had ankylosing spondylitis, which worsened so quickly that within half a month, it changed from low back pain to limb joint pain. This kind of disease hurt really badly, I couldn't get out of bed because of the pain, and I didn't even have the strength to eat from a bowl.
Seeing me like this, my wife was very distressed, and she began to take me to Beijing to seek medical treatment, and at that time we really didn't understand anything. As soon as I got off the train with my CT in my hand, I was stared at in the lobby of Beijing Railway Station. One of us started talking to me and asked us what we were doing in Beijing. Hearing that we had come to Beijing to see a doctor, the man also said that he had also come to Beijing to see a doctor, and he knew that there was a hospital specializing in the treatment of ankylosing spondylitis. We didn't know how to believe the man, and then went to a clinic to prescribe a lot of medicines. As a result, I took the medicine without any effect, and then I reacted that I had been deceived.
The picture shows a recent photo of me
After eating a long and wise meal, my wife and I will have an extra eye in the future. Later, we were introduced by the villagers to a chinese medicine hospital to see a doctor, and after taking medicine, we found that we could barely control my condition, and things began to slowly improve. Later, my wife went south to Guangdong to work in order to earn money, and I had to take care of my eldest son at home because I was sick. At that time, the people in the village said anything gossipy, but I didn't care at all. As long as my wife and I support each other and rely on each other, there is no obstacle that cannot be crossed.
Fast forward to 2017, and my wife accidentally became pregnant. Although the family was not in good condition at that time, we decided to keep the child. On June 21, 2018, our daughter Yu Yuxin was born, and the two of us did not have time to enjoy the joy of parenthood. On the second day, Yuxin entered the neonatal intensive care unit because of the fever, and lived there for half a month.
The picture shows Yu xin and her mother
Because to avoid infecting children shortly after birth with germs carried by adults, the hospital refused family visits. Several times my wife dragged me to the neonatal department to see Yuxin, who had just been born, but was blocked by the door of the ward. Until a week later, Yuxin needed to do MRI. We were allowed to visit our daughter.
After being discharged from the hospital, my wife and I decided that I would take care of Yuxin at home, and she would go out to work. At that time, I really felt sorry for my wife, if I didn't have a choice, no one wanted my wife who had just been out of confinement to work. It is not easy to take the child at home, in addition to feeding my daughter and washing diapers, I often take her to the hospital. Because Yuxin often gets sick, she has a fever almost once a month, and every time she has a fever, she has to go to the hospital. At that time, we did not pay special attention, only when the child was small and had poor immunity, it was good to raise it again.
At the beginning of August 2020, Yuxin began to cry because her stomach was particularly painful, and this abnormal reaction attracted my attention. I called my wife back in Zhejiang, and we took the child to Anhui Provincial Children's Hospital. When Yuxin arrived at the hospital, she was arranged to be admitted to the hematology department and did various examinations, and the doctor diagnosed the condition at that time: sepsis, moderate anemia, bronchopneumonia, and hyperimmunoglobulinemia.
In order to further confirm the diagnosis, the hospital recommends that we take the child to a higher hospital for treatment. So we hurried to Shanghai again. In the Affiliated Hospital of Fudan University in Shanghai, Yuxin stayed for a month. During the period, the doctor finally found out the cause of Yuxin's frequent stomach pain: the intestinal ulcer was serious, and the ulcer area was also very large.
The picture shows my wife and Yuxin
Under the advice of the doctor, Yuxin also did genetic testing, and the final results came out, and Yuxin had an immune deficiency. Doctors say there is a 90 percent chance that the white blood cell adhesion defect occurs in the country, and the national incidence of the disease is only one in a million, and the only treatment is transplantation. When we heard the news, we felt that the sky was about to fall: such a small child had this disease, and God was really unfair.
At that time, we faced many problems: 1, where to find hematopoietic stem cells to transplant to the daughter; 2, where to transplant; 3, where to find money to do the transplant for the daughter.
My daughter is pictured
The blows of life ensue, almost overwhelming us. At this time, the wife received a call from the eldest son's class teacher: "Your children are not in a good state recently, their grades are also regressing, he is already in the third year of high school, this time is very important." "I know that the eldest son is still affected by various things in the family. When the eldest son called his wife, he said, "Mom, I don't want to study, I want to go to work to earn money for my sister to see a doctor." ”
The wife almost cried and said to the eldest son: "Don't think too much, the money thing Mom and Dad will have a way, your top priority is to read the book well, so that you will not be like us can only do manual work." "At that moment I really felt very incompetent, I couldn't take care of my daughter, I couldn't earn money to treat her, and now even my eldest son is affected."
Maybe the truth of life is like this, we can only face it bravely. After borrowing a lot of money from relatives and friends around us, we can finally do hematopoietic stem cell transplantation for Yuxin. Unexpectedly, after the transplantation, it was followed by a serious rejection reaction: intestinal row, skin row, liver row, etc. Yu Xin's whole body was covered with small rashes, and she also had diarrhea every day. The daily job of the wife who accompanies the bed in the hospital is to disinfect and ensure the hygiene of the environment in the daughter's ward. The doctor said: "The main problem of Yuxin at this stage is the rejection reaction, this process is urgent, it has to be taken slowly." ”
The picture shows Yu Xin's feet
On June 9, 2020, the eldest son's college entrance examination ended. He called me and said, "Dad, I want to go to summer vacation work." On the third day after the exam, my son found a temporary job in the county to sell in a furniture factory. At that moment, I was touched by the thoughtfulness of the child. The eldest son's side is temporarily settled, but Yuxin's side has another problem: after the transplantation of the average child, he can be discharged from the hospital for about 50 days, but we have been tossing for almost three months, and there is still no progress. In order to save my daughter, our family has already incurred a bunch of debts, and the tuition fees for the eldest son's college studies have not been settled.
We also don't have a clear answer to how future treatments should go. Now that Yuxin has grown up slowly, she knows more things. Sometimes when I see the fruit on the table, I obviously want to eat it, but I still tell us: "I am sick, and I have to eat it when I am well." "The more thoughtful and considerate the child is, the more guilty we feel. I'm sorry for not giving her a healthy body and letting her suffer from these sufferings as soon as she was born.
The picture shows Yu xin and her mother
My wife and I have been married for almost 20 years, and we have all come all the way through these 20 years of ups and downs. In this miserable life, without her, I really feel that I will not be able to persevere. I don't know where the future of our family leads. The only thing that is certain is that as long as our family can still be together, there is no difficulty that cannot be overcome.
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