This 16-year-old boy is very "squeamish" and can't be bumped or touched! After knowing the truth, I actually cried!

The weather is sunny, a winding old Beijing hutong, in front of the door full of debris, living in an ordinary family.

16 years ago, Xiaoyu (pseudonym) fell to the ground here, which also changed the fate of the family.

I entered the house, and the white-haired boy's father carefully wiped the cup, boiled the water, and poured the tea. The only living room and bedroom for a family of three, a total of less than 20 square meters.

The old Beijing Hutong, which has been governed since last year, looks like a garden corridor in a series of images on the outside, but the moment the door opens and enters the courtyard, people feel the cruel atmosphere pervaded by the reality of life.

"I'm going to study e-sports and make money for my mom." The little boy covered with the quilt called me "sister is good" and then showed the sunniest smile of a 16-year-old.

But this laughing child was unfortunate and was diagnosed with congenital hemophilia at birth. The child's mother said that his father and I have been walking with the child for 16 years, no matter how difficult it is, we can't lose him.

The walls of the whole family are covered with foam 16-year-old child is a "glass man" who is afraid of touching

It is natural for children to fight, and bumps and bumps are commonplace, but Xiaoyu has lost this qualification since he was a child.

Children with hemophilia, a little bump, may bleed non-stop.

Because of this, the walls next to the single bed and the ground are covered with foam by Xiaoyu's mother, because once Xiaoyu touches something slightly harder, it may cause large-scale bleeding, which is also the biggest injury and pain of hemophilia patients.

Xiao Yu, who has been smiling

(Permission of the patient has been published in this figure)

Many people's memories of hemophilia seem to stay in the distant high school biology class.

From the perspective of the disease spectrum, hemophilia is one of the most typical bleeding disorders of hereditary coagulopathy.

Due to the disorder of active thromboplastin production, patients with hemophilia have a prolonged clotting time and a slight post-traumatic bleeding tendency for life, and the clinical manifestations are mainly post-traumatic or spontaneous bleeding of joints and muscles. In patients with hemophilia, if left untreated, chronic and disabling joint disease can be caused, while organ bleeding and cerebral hemorrhage can lead to more severe disability and death.

On May 11, 2018, the National Health Commission and other five departments jointly formulated the "First Rare Disease Catalogue", and hemophilia was included.

Xiaoyu has hemophilia type B, and the body lacks the clotting factor IX required in the coagulation process, resulting in prolonged clotting time, easy to produce spontaneous bleeding symptoms, and bleeding is mainly joints and muscles.

At this time, Xiao Yu, who was lying on the bed, was 172cm tall, but only weighed 80 pounds, so weak that he seemed to be able to see through the bones at a glance, yes, Xiao Yu could not stand up.

A picture of Xiaoyu at the age of 1 was provided by the patient's family

"All the memories of the 16 years I've been alive have been related to bleeding and injections."

From the beginning of Xiao Yu's understanding, he understood that he could not run and jump like other boys, could not go to physical education class, could not be pushed, and his parents did not let himself play with other children, and in the hearts of other children and parents, he was a delicate child who could not be "touched".

For the Xiaoyu family, it is a miracle that they can persist in the current 16th year.

"When Xiaoyu was 15 months old, once her lips were cracked, her mouth was full of blood in an instant, after holding her to the children's hospital, the stitches could not be sewn, and the blood would directly spray the thread..." Xiaoyu's mother recalled the experience of 15 years ago, her swollen hands have been trembling, and it was on that day that Xiaoyu was diagnosed with hemophilia.

Dr. Alfonso Iorio, a professor at McMaster University in Canada, conducted a meta-analysis of registration data from the countries with the most comprehensive hemophilia registries (Australia, Canada, France, Italy, New Zealand, and the United Kingdom)[1] and found that 21 out of every 100,000 men had hemophilia A or B, with 7 of them severely ill. Among newborns, 29 out of every 100,000 baby boys have hemophilia A or B, of which 12 have severe hemophilia.

Xiao Yu is one of the tens of thousands of hemophilia patients.

In the days after that, the family's biggest fear is that Xiaoyu will be "touched", the wall is not good, the cement floor is not good, even if you eat a little food that is not digestible, it may lead to stomach bleeding.

And Xiaoyu completely absent coagulation 9 factor (FIX) in the body can only be injected when bleeding, from the initial 400 yuan to the later emergence of drug resistance can only use 5780 yuan / ml imported all-round 7 factor, Xiaoyu's mother carefully took out the pill box, paused for a few seconds and said, the most time, Xiaoyu used 70,000 yuan of medicine a day...

A picture of the drugs used by Xiaoyu was provided by the patient's family

"Every time I'm afraid of shabu-shabu being unclean, I toss it with salt water again and again, and even a drop is money."

Although this factor in the treatment of hemophilia can already be reimbursed, for the Xiaoyu family, the reimbursed money will not arrive until the new year, which is the time that the child cannot wait.

"Even the Civil Affairs Bureau borrowed, a total of 19,000, although it can only infuse for one day, but it is also life-saving money." Xiaoyu's mother said, compared to the small medicine bottle that was less than the length of a finger, "I am afraid that it is not clean every time, and I use salt water again and again, even a drop is money."

Next to Xiaoyu's single bed, there is also an infusion rack, Xiaoyu's father said, because there is no money for hospitalization, Xiaoyu's mother practiced a good kung fu of infusion, found that her son's state is not right, and immediately mixed the medicine and needle.

"It's all my equipment, I used to know no medicine at all, and now for my son, I feel that my skills are better than nurses." Xiao Yu's mother shed tears while touching the needle in the box, "They all blame my bad genes, I am sorry for my son..."

Xiaoyu's mother holds the device she gave Xiaoyu infusion at home The picture was provided by the patient's family

Running to the hospital in the middle of the night, the mother who was sent to school for 24 hours did not dare to leave

"Once my hip was bleeding heavily, I had to lie in bed for a month." When he first went to junior high school for military training, Xiao Yu went his scalp once, and as a result, he accidentally had a bleeding foot and swollen for more than forty days, so he could only stop military training and leave his classmates.

Despite this, every time he thinks back to the days of the former campus, Xiaoyu still smiles brightly.

Skinny Xiaoyu, 172cm tall only 80 pounds Picture provided by the patient's family

For Xiaoyu, as long as he is alive, he is already the driving force for his parents to laugh. But for this 16-year-old boy who has been unable to continue school since last September, studying and exams are also his motivation, and he is really eager for knowledge in school.

"English speaking test, the child has to go, the night before began to endorse, but also let me set the alarm the next day to 7 o'clock to continue to memorize", speaking of the exam a few months ago, Xiaoyu's mother looked at her son and smiled, she washed her son's hair, pushed the wheelchair to go to the examination room, did not expect 40 points, Xiaoyu actually scored 38 points.

Xiaoyu's mother's eyes were full of pride and heartache. "If Xiaoyu is a healthy child, maybe he is playing football on the playground with his classmates now, maybe he is a smart student with the best grades in the class, and now, Xiaoyu can't even stand on his own."

Xiaoyu's mother said that due to the child's poor health, from small to large for 16 years, where the father has been carrying his son, running to the hospital in the middle of the night, sending him to and from school, 24 hours dare not leave the child, no matter where the body will have blood bubbles.

Xiaoyu, who has been laughing next to him, said that he is 18 years old in more than a year, and he must get up quickly, go to school, go to the middle school entrance examination, live well for his parents and mother, and make money for his mother after recovery. In his memory, his parents had not bought a new dress since he was sensible.

The 12-year-old Xiaoyu and the award are provided by the patient's family

New drugs are listed and medical insurance reimbursement is provided

People with hemophilia have hope

Lei Pingchong, head of the Henan Hemophilia Diagnosis and Treatment Center, cited such a set of data at the "2019 World Hemophilia Day Public Welfare Activity": There are now 4,000 to 5,000 hemophilia patients in Henan Province, but only 2,000 people are currently registered, and more than 700 people are treated.

In recent years, thanks to the improvement and upgrading of medical technology, especially the continuous improvement of medical insurance reimbursement and charity relief policies, the two major medical problems of "no medicine" and "high medical expenses" in the past have now been greatly improved and solved, and the diagnosis and treatment of hemophilia is gradually improving, and the economic burden of patients has been greatly reduced.

Compared with the medical cost guarantee of "affordable disease", Lei Pingchong believes that the most important task at present is to do a good job in the preventive treatment of hemophilia patients, that is, in the case of no bleeding, timely supplementation of coagulation factors in the body to prevent problems before they occur.

Pediatric hemophilia patients should start preventive treatment from the age of 1 and a half years, so that early intervention is conducive to the child's joint development, reduce bleeding symptoms, and reduce the disability rate.

"Even for children with severe hemophilia, early preventive treatment can raise the coagulation factor in their body to a 'moderate' level, at this time as long as they are not traumatized and do not perform strenuous exercise, the patient will not spontaneously bleed, and it is not easy to cause disability." Lei Pingchong said that as far as the current medical insurance reimbursement and rescue policy is concerned, adhering to preventive treatment within the age of 5 will not have a great financial burden on the families of the children.

In order to let his son survive the last growth period, Xiaoyu's parents opened a number of fundraising platforms, Xiaoyu's father said, if it is a rich family, we can provide supplementary factors for the child, there is no need to let the child suffer these sufferings, but all our medicines are calculated, it is my incompetence...

Xiaoyu's mother put her hand on her father's shoulder, and she told reporters that she had said when she really had no money to buy medicine that she would commit suicide by holding her son, so that Xiaoyu's father could find a healthy person to form a new family. But Xiaoyu's father will always be that sentence: I will cure my son's illness, and we will raise my son together.

In fact, in recent years, there have been new breakthroughs in the diagnosis and treatment of hemophilia and drugs.

Over the past few decades, the clinical treatment of hemophilia has improved significantly, and the life expectancy of patients with hemophilia has increased significantly. At the end of November 2018, important progress was also made in the treatment of hemophilia in mainland China, and the State Food and Drug Administration (NMPA) officially approved the listing of new drugs for hemophilia in China.

Perhaps, compared with many cancer patients, Xiaoyu is lucky enough, because he is lucky to have money to cure the disease.

But for more hemophilic families with four walls, money is also the last straw that overwhelms them, and if they are not careful, they can no longer save their lives.

Inside the three wooden doors of this old Beijing hutong, this family of three has lived a mediocre life for 16 years.

The parents were careful and did their best to guard their son Xiaoyu, the life they held in the palm of their hands.

And Xiao Yu, who was lying on the bed, said, if I can, I still want to go back to school...

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[1]https://medicalxpress.com/news/2019-09-hemophilia-prevalent-thought.html

*The illustrations in this article are provided by the patient's family, showing that the publication has been approved by the family.

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