Two daughters in the family are sick, and $700000 can only save one mother from collapse

 Two daughters in the family are sick, and $700000 can only save one mother from collapse

When theres no medicine, Im desperate; when I have medicine, Im worried about money; when I finally get money, Im still so worried.

Bai Liushuans two daughters, Mengyuan and Mengru, are 13 and 5.5 years old respectively. Both were patients with spinal muscular atrophy (SMA), a rare disease. In 2019, Qianjiang Evening News once reported that a new drug for SMA was on the market. Bai Liushuan saw hope from years of despair, but the drug price of 700000 for a needle once made her hopeless.

I cant just watch them die. Within a year, Bai Liushuan used various channels to raise funds. She did not expect that she was getting closer and closer to 700000.

Mengyuan and Mengru

Pain with medicine

Mengyuan and Mengru were diagnosed with SMA since childhood. This is a rare disease that can cause muscle atrophy or progressive freezing. The consequence of no treatment is: with the increase of age, the patient will have severe bone deformation of spine, pelvis, knee joint, respiratory function and digestive dysfunction, gradually lose swallowing function, serious respiratory complications, and even death.

Todays dreamland is lying most of the time, her waist to legs have been twisted and deformed, occasionally can sit, but the waist with a pillow cushion, and half an hour to change posture.

Because she was young, Mengru was a little better than her sister. Her body deformation was not so severe, and her sitting time was slightly longer. Last year, she was able to sit alone on a small stool and land on her feet, which is not the case this year.

The disease progressed rapidly and violently.

Before 2019, Bai Liushuan was desperate. She took her two daughters to seek medical treatment everywhere, and the answer was the same: there is no medicine for this disease. In despair, she accepted the reality that her two daughters had no future.

Until October 2019, she got the news: in February of that year, the State Drug Administration officially approved the use of nosinogenase sodium injection for the treatment of 5qsma, which indicated that SMA had medicine to cure from then on.

Bai Liu Shuan was so happy that she burst into tears. However, the excitement was fleeting: the injection of sodium nosinogenase was 700000 yuan per injection, and the patient needed to use it for life.

If you say myrrh before, youll have to die. But now I know I have hope, but I cant grasp it. I feel like a knife in my heart. Bai Liushuan didnt expect that there was medicine to make her more painful.

Im sorry to let you know my child in this way

Bai Liushuan and her husband, Huang Yinhua, are from Henan Province. Their family came to Hangzhou for work in five or six years. Their family income mainly depends on their husband driving a taxi. The medical expenses are sky high to them.

After learning that nosigna sodium was on the market, she began to do everything possible to raise money for her two daughters.

She had begged on the street with her two daughters, and she called the media.

The first time I called the TV station, there was no news. I hit again, and then I cried. I said, I really cant hold on to it any more...

After media reports, Bai Liushuan received donations from some kind-hearted people.

I see hope. There are still many kind-hearted people in the society. Maybe my daughter can be saved.

Bai Liushuans family lives in a private house in the north of Hangzhou. A family of four lives in a room with only two beds. Huang Yinhua is not at home most of the time.

He went out at 5:00 a.m. and came back at 10:00 p.m. with one car and one person driving. If you drive a little longer, youll earn more.

Every day before going out, he would take steamed bread with him. This is his lunch of the day: boiled water with steamed bread. Sometimes its biscuits. Throughout the year, he never goes off work, so does the Spring Festival. This years new epidemic, I have the first spring festival break.

Dream garden of treatment

Huang Yinhua gets out of the car and Bai Liushuan sends a short video at home, which is the only thing she can do. Until then, she didnt know what a short video was. The staff of the charity organization taught her how to raise money.

She took videos of her two daughters: they were unable to get up in bed, they needed someone to report when they got up, their thin deformed legs, they were happy to turn around in wheelchairs, they cried when they couldnt sleep well at night, and their occasional silence

The purpose of this is naturally to let more people see and donate money.

The larger dream garden is not talking, just some stubborn pursed mouth.

I reason with her, she can understand. Bai Liushuan bowed her head and wiped her tears. She was not well.

Some netizens left a message to her: you are net beggars.

Who wants to be a beggar? Theres a way. I dont want to take the kids like this. Bai Liushuan replied to the netizen and said: sorry, let you know my children in this way

Some netizens asked: why not do production inspection?

There are also netizens to see the video of two girls, message said: a dead end.

This sentence like a thorn, into her heart.

I know the truth, and theres no harm in it. But when you see this sentence, you dont know, my heart... Bai Liushuans tears came down again. She was tired and haggard, always talking and crying.

My child, she cant wait

However, there are still many people with good intentions. Many people donated money to her, more for comfort.

They said it was very painful to see my daughter like this, and there were a lot of people who encouraged us. Theres really a lot of positive energy. These words not only comforted Bai Liushuan, but most importantly, it made her stick to it. There must be a lot of good people. My child will be saved.

Some time ago, Bai Liushuan told me that she was about to raise 700000 yuan. My daughter was getting closer and closer to the life-saving needle. I was very surprised.

I didnt think it was so fast. Bai Liushuan said.

In May last year, the China Primary Health Care Foundation launched the spinal cord muscle atrophy SMA patient assistance project: after the first dose of patients received a bottle of nosinoxate sodium injection, all the data were approved by the foundation, and the maximum number of patients who received the first dose was 3 bottles.

This means that after raising 700000 yuan, Mengyuan or Mengru will have more medicines to use.

Bai Liushuan has no time to be happy. She finds herself in another dilemma: which daughter should use it first.

When I saw the two children again, Mengyuan was undergoing treatment. She was in a wheelchair with a steel ring on her head, and she was straightened.

Mengyuan had to keep this sitting position for 134 hours every day from morning till night. She had been doing this for three months. Her body was badly deformed, her internal organs were oppressed and she had difficulty breathing.

A month ago, Mengyuans cold developed into pneumonia, but it has not been cured yet. Because of the deformation of the waist and the blockage of the respiratory tract, it is necessary to use a sputum aspirator to suck sputum.

We heard that in Beijing, surgery can be done to correct her posture. There are children who have the same disease over there In May this year, Bai Liushuan and her husband wore Mengyuan to Beijing. The doctor asked her to correct the disease first and prepare for the operation.

Mengyuan cant wait. I want her condition to be improved. At least, she can sit up. If she goes on like this, she will be oppressed to respiratory failure Bai Liushuan said in a low voice.

Who will use the first money

She and her husband have discussed countless times about who should take the first shot. Because of this problem, she couldnt sleep all night.

Its a rational choice.

Bai Liushuan knew what this meant. She was silent.

Soon, her husband said, but Mengru has time to wait.

So they went back and forth.

Mengyuan was once judged by doctors that he could not live to be three years old, but Bai Liushuan had gone through 13 years with her daughter. She is the support of the dream garden, and the dream garden is not the power to support her to go down.

After so many years, Bai Liushuan couldnt give up her when she saw the hope.

But if Mengru is delayed, sooner or later she will become like her sister.

This summer, Mengru can swim every day, which is a kind of rehabilitation therapy recommended by doctors, which can reduce the burden on her body. When floating in the water, Mengrus feet can flutter. At this time, she cried out happily: Mom, look, I can walk!

Mengrus swimming pool

I just want to buy time for the two kids

There was no medicine, but now there are, and new drugs have been developed. Bai Liushuan said she just wanted to buy time for her two children: maybe new drugs are cheaper, maybe drugs for SMA can be included in medical insurance It may take another two or three years, or three or five years, and I want my children to hold on to that time.

My children have hope, just need money, although a lot, but if I let go now because of this, the two children will not have a chance. Bai Liushuan said over and over, I believe no mother will let go. If there is no medicine, I will die, but now there is medicine, the child is so smart and cute, I want to seize the opportunity bit by bit. If I dont fight for them, Ill feel guilty all my life...

(function(){( window.slotbydup=window .slotbydup||[]).push({id:u5811557,container:ssp_ 5811557, async:true }Source: Qianjiang Evening News Author: Wu Chaoxiang, editor in charge: Han Jiapeng_ NN9841