Hangzhou City, a street in Jianggan District.
Chen Jianfeng rode an electric bicycle through the cold wind and quickly returned to his rental community.
He was wrapped up tightly and wore gloves on his hands. He locked the electric car to charge and dragged his tired body back home.
It was already 11 o'clock in the evening, and there was food simmering in the rice cooker. He silently took off his hat and gloves, and started eating the food in big mouthfuls.
The wife came out of the bedroom, poured a cup of hot tea, placed it in front of him, and carefully turned the cup so that the gap on it would not face him. Then she smiled and said, "How are you today? Are you tired? Tomorrow. What food do you want to eat?”
Chen Jianfeng swallowed a mouthful of rice, picked up the cup, took a sip of tea, and exhaled with difficulty: "That's it, just eat whatever you want."
He was only in his early thirties, and his temples had begun to turn gray. He looked as old as if he were in his forties. After a hard day's work, he looked even more tired and weathered.
"How are Nini and Xiaojian today?" he asked while eating.
The wife's face suddenly became filled with sorrow: "It's still the same. I'm so weak that I can't move in bed. I can only use a ventilator to breathe. I'm taking care of you at home. Don't worry."
Chen Jianfeng nodded, said nothing, and immersed himself in eating.
The wife hesitated to speak, and finally said after a while: "Have you thought about it? You are going to see a doctor tomorrow. Which child should you give the medicine to?"
Chen Jianfeng didn't speak and ate up the rice in silence. He carefully finished every grain of rice without wasting any.
The wife's voice was already choked with sobs: "As you speak, you have to make a decision. We look down on the two children, so we can only choose one."
Chen Jianfeng was suddenly upset, but he couldn't get angry, so he could only ask in a low voice: "What do you think?"
"How can I, a mother, be so partial? My son and daughter are all part of me. I can't make a decision."
Chen Jianfeng said irritably: "Aren't you talking nonsense? Is this decision easy for me to make? Can we talk about it tomorrow?"
The wife suddenly raised her head, her face full of hope: "How about you borrow some more money so that both children can take medicine?"
Chen Jianfeng was silent for a while, and then said with difficulty: "It may be a bit difficult. We already owe 400,000 yuan in debt. Although the folks in the village have not collected the debt for the time being because of the child, I am too embarrassed to borrow any more."
"As you know, I am the only one working in the family now, and I don't have much money left except for living expenses. I don't know how long it will take to pay off the debt. I still have to save 60,000 yuan to treat my child, so for the time being I only I can choose one.”
The wife forced out a bitter smile: "I know, it's not easy for you either. I wish I had known better that I didn't want Xiaojian."
"It's okay. As long as one of the children is better, he can grow up and you can relax. When the time comes..." Chen Jianfeng said it several times, but in the end he didn't say the rest.
Maybe he is not sure in his heart what the future of his miserable family will be like.
The wife sighed: "Why are you thinking so much? Otherwise, let's treat Nini first, and then send her back to the old man to take care of her, and go to school at the same time. This way I can have more time and see if I can find something to do. More If you earn tens of thousands, you can save Xiaojian again."
Chen Jianfeng hesitated for a while, then said with a wry smile: "Okay, I'm going to become an old man, and I won't be able to hold my head up in the village anymore."
His wife glared at him: "So what? Human life is at stake. Just ask them to come to your door to demand debts, and see if I don't scold them one by one."
Chen Jianfeng shook his head in confusion, got up and walked towards the bedroom: "I'm going to see the child."
There were two beds side by side in the bedroom, filling the space. One bed was where the couple slept, and the other bed had two children, a boy and a girl, lying on it.
Both children were on ventilators. The boy was less than two years old and was already asleep.
The girl was about four years old. When she saw him, her eyes suddenly lit up and she blinked slowly at him.
Chen Jianfeng knew that this was his daughter greeting him. He walked over and held his daughter's hand. Looking at her clear eyes, he felt a sense of powerlessness in his heart.
This emotion has never been as strong as it was at this moment, and he felt that he was really useless.
Logically speaking, when a person reaches middle age and has both children, it is a happy event for any family.
But Chen Jianfeng's family is different. He and his wife are both sma gene carriers.
SMA is a recessive inheritance, and people who carry the disease-causing gene may not necessarily show symptoms of SMA.
Studies have shown that 98% of children with SMA have parents who are carriers, and the remaining 2% are caused by de novo mutations.
So neither of them knew that they still carried this gene, so it was an instant tragedy.
Four years ago, my daughter Nini was born, and she was fine at first. However, when she was more than 1 year old, my wife found that she still refused to get off the ground and walk, so she took her to the hospital. After repeated diagnosis, she was diagnosed with the rare disease SMA.
"Your daughter can live to be four years old at most. Go home and take good care of her. This disease is terminal and there is no cure." The doctor's words at that time still echoed in his ears.
Chen Jianfeng was confused at that time. After he recovered, he took his daughter to major hospitals in Jiangnan and even traveled across the country to seek medical treatment, but he was told the same result again and again.
In the end, he spent all his savings and even incurred more than 400,000 yuan in debt.
But not only did my daughter not improve at all, she even gradually lost the ability to move her lower limbs, and the ability to move her upper limbs was also weakening. The deformation of her spine has become more serious now, and she even needs a home ventilator to assist ventilation.
During his long treatment career, he knew that it was impossible for his daughter to get better. After consulting a local doctor, he learned that if he had another child, the chance of suffering from the disease was only 25%.
If this child is healthy, he can take care of Nini in their hundred years.
So the couple decided to take a gamble for Nini.
Two years ago, my son Xiaojian was also born. However, unfortunately, tragedy happened again.
When he was one year old, Xiaojian was diagnosed with SMA again.
After the couple gave birth to their son, they learned that one in 50 people is a carrier of the SMA disease gene. As long as the second child has a prenatal check-up, or carriers in high-risk groups with family history are screened, the new disease can be effectively blocked. incidence cases.
But the couple were both farmers. They had no idea that prenatal genetic testing could be done for this disease. Moreover, there was no corresponding local testing institution at that time, so they could only swallow this bitter pill with tears.
Later, he brought his family to Hangzhou and made money by delivering food. At first, he wanted to pay off his debt.
The future of their children was no longer what they expected. Anyway, doctors said that both children would not live to be four years old.
Xiaojian's condition seems to be even more serious. Not only can he no longer move, he can no longer even be completely weaned off the ventilator.
However, the intelligence and consciousness of the two children are normal, and they can still interact with the couple to a certain extent.
Such a scene undoubtedly made him sad and painful.
Three months ago, when they went to the hospital for another check-up, the doctor told them good news.
A drug to treat SMA, Biogen's Nosinaxin Sodium Injection has been included in the medical insurance, and the price has dropped to 30,000 yuan per injection. Plus medical insurance reimbursement, the first year's out-of-pocket expense is about 60,000 yuan, plus charitable donations. Waiting for some relief, it is estimated that 20,000 yuan per year will be enough in the future.
After learning about this, the couple was overjoyed, finally waiting for an affordable SMA drug.
They also asked at that time if there was any medicine that could completely cure the disease.
There is indeed a 'miracle drug' that can relieve symptoms for a long time or even cure patients as long as they receive a single intravenous injection.
However, it was a sky-high price. The figure of 14 million made the couple stunned and speechless for a long time.
This astronomical figure has exceeded the imagination of two honest rural people in Badajiao.
Just counting the following zeros may be difficult for them.
You know, this drug costing tens of thousands of yuan is a bit heavy for them.
And since they have two children, the cost of treatment will double.
One child can be provided for no matter how hard and tiring it is, but for two children, the first year's cost is 120,000. How can you get this money?
After much thought and hesitation, the two decided to save one child first, but they never decided which one to save.
In fact, Chen Jianfeng knew that his daughter was already four years old. If she didn't use medicine, she might not survive this year.
This first quota must be given to my daughter. After her daughter recovers, she will be sent back to her hometown for her parents to take her and live a normal school life.
Later, I asked my wife to find another part-time job to see if I could save another 60,000 yuan as soon as possible to treat my son.
No matter what, at least life finally has a glimmer of hope compared to the previous gloom and gloom.
Chen Jianfeng stayed with his daughter for a while and then went to bed to rest.
Not long after he lay down, his wife suddenly rushed in, shaking his body crazily and calling softly.
"Wake up! Wake up!"
Chen Jianfeng opened his eyes drowsily, a little irritated: "What's the matter? Can't we talk about it tomorrow?"
The wife handed over her mobile phone, and the WeChat chat group screen was displayed on the screen.
This is a patient group for SMA patients, where family members often exchange treatment information and help each other. Chen Jianfeng’s residence and job were introduced by an enthusiastic patient, so he had a place to stay as soon as he came to Hangzhou. .
Chen Jianfeng's vision was still a little blurry, and he struggled to read the message on the screen.
One by one, there are many.
Most of them are random comments from group friends, and there are also a few links.
He didn't even look carefully and just turned back.
Suddenly, a piece of news came into view, which shocked him all over, and he sat up straight.
"Amazing news! Sanqing has developed a gene therapy drug that can completely cure SMA. We are now recruiting patients for free clinical trials. Interested patients can apply."
He opened his mouth and couldn't come back to his senses for a long time after reading this news.
His wife pinched him hard to wake him up.
As if his butt was on fire, he immediately jumped up from the bed and rushed out of the bedroom.
The wife followed and asked in a low voice: "Look at the other news, should we go to the doctor tomorrow and ask again, or what? Hey, it's so late at night, I don't know what to do, I'm so worried. "
Chen Jianfeng held the phone in both hands, his fingers trembling slightly. He quickly read through the messages of his group friends and finally figured out the general situation.
It turns out that the domestic pharmaceutical giant Sanqing Pharmaceutical announced this news today, and the couple were too busy to see the news in the group.
It wasn't until midnight when everyone was having a heated discussion that his wife saw him and woke him up quickly.
Sanqing has announced its contact information and clinical partner hospitals on its official website.
The patients in the group also asked the doctor and got confirmation.
Chen Jianfeng looked at it for a long time and made a decision resolutely: "We will go to Kunming First People's Hospital tomorrow morning to apply for clinical trials for the children, and buy the fastest high-speed train. Don't worry, Hangzhou and Kunming are very close, more than one The hour-long high-speed rail is available in time.”
My wife was so surprised and happy that she almost jumped up.
Chen Jianfeng suddenly walked over and hugged her tightly.
He whispered in his wife's ear: "The children are finally saved."
"Woo..." His wife buried her head in his arms and sobbed silently.
She kept her voice low so as not to disturb the child.
Although it was a cry, there was no sadness in it, only endless joy.
And a strong release of emotions after being suppressed for a long time.
