After getting sick, walking and standing are very hard, sleep with a ventilator, or you will suffocate.
About 200 people across the country have the disease.
His name is Wang Weijia.
He is also a senior three student, a student bully. I got 662 points in the college entrance examination.
On August 21, Wang Weijia received an admission notice from Nankai University.
Later, he became popular on the Internet and was named by CCTV.
Fate kisses me with pain, but I repay it with songs is Wang Weijias motto.
He is also the most perfect footnotes to this sentence.
It is 1.74 meters tall and weighs less than 90 Jin. The spine is bent and the body is S-shaped.
Running and jumping are extravagant hopes.
His body lacks an enzyme, which makes glucose unable to provide energy for muscles and organs.
To put it simply, the lack of muscle development means that there is no skeleton.
As a result, the muscles cant support the body and they cant breathe normally when they sleep.
When Wang Weijia sleeps, his breath will be suspended for up to 18 seconds.
In other words, if you dont wear a ventilator, you will suffocate after a sleep, or brain death.
Once the ventilator was worn, it took six years.
He couldnt pass the PE exam in the first grade of junior high school.
The mother was very puzzled: the child is so young, why cant live. I thought it was a lack of exercise.
The next day, my father got up early and took him to run. But he runs very slowly.
I went to the hospital and found it was Pompeiis disease.
As mentioned earlier, this disease is very rare. Rare to 57, 000 people, only one will get sick.
Unfortunately, Wang Weijia is the one.
My mother said, I feel like the sky is falling down. Its incurable at that time.
At that time, the only medicine available only in the United States was extremely expensive.
Normal treatment costs more than one million a year.
This is an astronomical number for an ordinary family.
It cant be cured.
As he grew up day by day, Wang Weijias condition worsened.
Side bending, deformation, and finally no longer standing up.
Later, drugs were also available in China.
However, according to his weight, he has to use 20 bottles of medicine each time, with a price of 5480 yuan per bottle, and at least 220000 yuan a month.
It still cant be cured.
Parents can only watch their sons back tilt down day by day.
My family has only 20 mu of land, and my father goes to the construction site to work in his spare time.
Until last year, in order to make his son successful in the college entrance examination, the father asked people everywhere to borrow money to buy medicine for his son.
I went to Beijing once a month and took 10 bottles of medicine each time, which cost 50000 yuan.
Father tried his best to use only the lowest dose.
But Wang Weijia is optimistic.
The first infusion, he said with a smile: Oh, all of a sudden into more than 50000 yuan, I feel that the value has also increased.
After diagnosis, Wang Weijia could no longer do without the orthosis brace.
The brace is very hard plastic.
Its hard to imagine what its like to keep it tightly bound to the body every day.
In the classroom, you have to sit from morning to night.
In addition to the pain of illness, but also to endure the pain of brace compression body.
After entering high school with excellent results, Wang Weijia studied harder.
He got up at 5:45 in the morning and went to sleep at 11:30 p.m.
In fact, dont say class, just sit still for a class, he will be too tired.
But he never yelled tired.
Ding Junhua, his teacher, said: its very difficult for him to insist on seven or eight classes. But he persisted and took an active part in classroom activities.
Only once, he was in pain.
He said, teacher, Im not feeling well. Can I stand up for a while?
Many people say that studying in high school is like going to the battlefield, not only for brain power, but also for physical strength.
He cant spell anything but diligence.
He said: I can only learn a little more every day. If I am tired and cant keep up with the class, I can only spend more time learning after class.
At 10 oclock in the evening, he will continue to study on the Kang.
Not a day of relaxation.
Wang Weijia is very strong and never treats himself as a patient.
Liu Pengli, his teacher, said: if he was given special care, he would feel embarrassed, and he would take the initiative to ask I am just like a normal student
But no matter how strong he is, he is just a child.
There are bound to be times of collapse.
There was a final exam, there was only one subject left. Wang Weijia was walking to the examination room when he suddenly fell down.
His front teeth were broken and his mouth was covered with blood.
He was extremely depressed: I live like this, I still test what test.
It was December. It was very cold.
But not Wang Weijia.
Turn the tap to the maximum and wash your face with cold water.
He looked at himself in the mirror and thought, Im all like this. If I dont study well, what should I do? I have to take an exam.
So he gritted his teeth and went to the examination room.
The result was very good.
Its like someone elses business.
After the end of the college entrance examination, more than two months of vacation, for peers, there are only four words: eat, drink and have fun.
For Wang Weijia, its feedback.
He opened a cram school for six younger brothers and sisters in the village.
The class starts at 8:00 a.m. and has three classes with 75 minutes each.
Theres another class in the evening.
Body deformation forward serious, to be very hard to not fall.
I was sweating before the class was over.
Its very hard.
Every second is suffering.
He just wanted to repay him.
In order to take care of him, the whole class stayed on the first floor without changing classrooms for three years. In order to take care of him, the teacher always let him sit at the door. When you see him riding a bicycle, you will reach out and push him. Occasionally he came to the playground, and his classmates would accompany him for a walk. The school arranged cleaning for his mother and provided dormitories for her to take care of Wang Weijia. u00b7u00b7u00b7u00b7u00b7u00b7
I have been helped by so many kind people. Do you think I should give back to the society. As a way to repay them, the tutorial school was set up
When he said this, Wang Weijia was laughing again.
His illness has brought him inconvenience, but he is still optimistic.
Ding Junhua, a teacher, said: he always smiles. He is too cheerful. At the beginning, you face him with sympathy, but in the end you will forget his disability and only remember that he is a sunny and cheerful child
Before meeting Wang Weijia, the volunteers were worried that he was not in a good mental state..
The volunteer said: he is extremely optimistic. He has a kind of I am my destiny, not my destiny.
He knocked on the door of the university with high marks.
The only secret, he said, was to clench.
Now that you are sick, if you give up on yourself again, you will comply with it? On the contrary, I want to do better and live a more wonderful life!
Wang Weijia said so and did so.
After it became popular, there was an endless stream of interviews.
Facing the camera, he is confident and calm.
He hoped that people could pay attention to Pompeii disease and help more patients through him.
Fate gave him a bad hand.
He was a kings bomb.
He changed from a person in need to a person who provided help.
Jane said, when God gives you wilderness, it means that he wants you to be a flying eagle.
When fate gives him a sick body, but he still flies against the wind.
And I ran into a dream.
Writing here, I am deeply moved. Wang Weijia can do his best to change his fate.
What reason are we not strong? No effort?
None of them.
Like the classic dialogue in the movie the last warrior:
Do you believe that man can change fate?
This is a difficult question.
Yes, too arrogant.
No, too fatalistic.
The person who answered thought for a long time, and then said, people should do their best, and then, let the fate of heaven come.