My name is Zhao Dongqiong, a native of Zaolin Town, Bazhong City, Sichuan Province, and I met my fellow villager Yang Chao in 2017 when I was working, and he is 5 years older than me. March 28, 2019 was my birthday, and it was on that day that I found out I was pregnant. At that time, my husband and I were very happy, thinking that this was the best gift from Heaven. After I became pregnant, due to physical reasons, I stopped working and concentrated on raising a baby at home. We attach great importance to the health of the fetus, and every obstetric examination is not left behind, and we are afraid that something will be wrong with the child.
On November 1, 2019, at the Sichuan Hometown Hospital, I gave birth. On that day, a snow fell in the Bazhong area, and we saw the snowflakes blowing outside in the warm delivery room, and the whole world was white, so beautiful, so poetic. So we named our daughter Yang Yaxue, and our nickname was Xuebao—the treasure we got on this snowy day.
Seeing that Xuebao was white and pure, the whole family liked her very much. On the fourth day of our birth, we were discharged from the hospital and returned home. Due to the first time as a parent, there was no experience, Xuebao cried on the second night of discharge, how to coax, my husband and I can only take her to the hospital to see. After running several hospitals, the doctor said that Xuebao jaundice was very high, needed to be hospitalized, and could not be visited. I was very anxious at the time, so I found a small hotel opposite the hospital for one night. The next day I received a call from the doctor saying that the child was not in a very good condition and asked us to go home and wait for the news. The child was so young, he left my arms at birth, his heart could not be put down, he could not sleep well at night, and he shed tears all night.
After two days, the child was discharged from the hospital, and I was very happy, and the moment I saw her, I was trembling with excitement. When I got home, she cried every night, and my husband and I had to take turns hugging and coaxing. During that time, our couple was listless all day due to lack of sleep, but their hearts were very sweet. I thought to myself, every parent will go through such "torture".
The children grew up day by day, and when Xuebao was 3 months old, our whole family came to Shanghai to work. But a month later I found that Xuebao was a little different from other children, her head was always erect, and I thought: maybe it was stunting. But by the 5th month, it was clear that The Snow Treasure was not working vertically and was getting softer. Went to shanghai Fudan Pediatric Hospital neurology examination, at first the doctor also said that it may be stunted growth, I listened to the heart of a relaxed, reassuring a lot. But the doctor also suggested that we give the child an electromyography.
After the ELECTROG, the results were not very good, and the doctor recommended that we do genetic testing, and the child was diagnosed with SMA (spinal muscular dystrophy). Through the Network, we learned that spinal muscular atrophy (SMA) refers to a type of disease that causes muscle weakness and muscle atrophy due to degeneration dominated by anterior horn cells of the spinal cord. Half of the disease occurs within 1 month of birth. Most people present with hypotonia shortly after birth, with muscle weakness predominantly involvement of proximal extremity muscle groups and trunk muscle weakness. Children with weak sucking and swallowing, low crying, shallow breathing, abnormal thoracic movements, difficulty turning over and looking up, and most of them die about 18 months after birth.
Seeing the news, I suddenly broke down, Xuebao looks so cute, why is this so? I was not reconciled, and went to the doctor again, I did not believe that this disease could not be saved. The doctor saw my anxiety and said in a comforting tone: "This disease is really terrible, it is difficult for ordinary children to live past two years old, but you don't have to be too pessimistic, now there is a drug (Nosinasso sodium injection) that is very effective for this disease, but the price is expensive, a shot needs 700,000 yuan ..."
700,000 yuan a needle! For families with ordinary conditions like ours, where to get so much money? And it requires lifelong medication. At that moment, I was desperate and helpless, and my heart was broken. At the same time, he hated that he did not have the ability to earn money and did not have the ability to protect his flesh and bones. Helplessly, we can only carry our daughter home, and we can only watch her slowly degenerate. Looking at my daughter every day, it was as if her life was moving away from me little by little, and the struggle and pain in her heart could not be expressed in words.
On October 2, 2020, when Xuebao was 11 months old, she developed respiratory failure and severe pneumonia, and my husband and I carried her to Nanqiao Central Hospital in Fengxian District. The doctor told us after a bout of rescue that the child needed to be intubated and that we were transferred to the hospital. At that time, after being transferred to Fudan, he was immediately sent to the ICU. Saying that the child should be intubated and cannot be visited, we can only wait at the door of the ICU every day to wait for the news, but every day we wait for bad news.
Half a month after the child was intubated, the doctor told us: "The child can't remove the tube, we have tried our best, you take it home, accompany the child more." Hearing this, I knew that Xuebao was not saved, and my brain was suddenly blank, and then I had no consciousness. My husband hugged me and woke me up. I snatched the snow treasure from the doctor's hand for the first time and held it tightly in my arms, afraid that if I let go of my hand, the snow treasure would disappear from my eyes forever and never be seen again.
Just as I took the snow treasure, she actually turned her face and smiled at me, she smiled so sweetly, so innocently, but mixed with a little grievance. At that moment, I found that our mother and daughter were so close, and I was so reluctant to snow treasure. On the way home, his father and I cried all the way, taking turns holding Xuebao, no one felt tired, and no one was willing to let go easily during the exchange, afraid that Xuebao would be gone.
When we got home, we immediately bought her an oxygen concentrator and rented a suction machine. I have not learned to suck and cough up phlegm, for the sake of Snow Treasure, I can only go online to check the use of the method over and over again. Slowly, Xuebao persevered, and actually magically improved day by day.
At the end of 2020, we began to raise funds through social benevolent people, hoping to raise enough money for the first stitch. At that time, I was worried that I would not be able to raise so much money, but soon the good news came, and the sodium of Nosina was reduced from 700,000 to 550,000 injections. And soon we raised the money for the first injection and took the child to Chongqing for the injection. After the first injection, Xuebao was afraid of the hospital and doctors, and in order to eliminate her fear, I stayed by her side for 24 hours a day. After the second injection, the effect was obvious, and Xuebao's legs had strength. But before her father and I could be happy, Xuebao was admitted to the hospital because of the bleeding of the gastric tube.
After being discharged from the hospital, the child completed the third and fourth injections in Chongqing, and the effect was very good. At present, I am at home with Xuebao, caring for myself, and am waiting for the injection of the fifth special drug. Initially, many people advised us to give up Snow Treasure. They are worried that the money will be spent, and in the end they will not be able to save the children, and the people will be empty of money. But my husband and I are very determined to save the children. Children can have today, thanks to the well-wishers in society, without them, perhaps Xuebao would have been gone a long time ago.
I am especially grateful to this society for giving Xuebao the opportunity to be reborn. Since the fourth shot, Xuebao has obviously been "active" a lot. Now, she can basically take off her ventilator during the day and breathe freely. Watching her change so dramatically, her dad and I were moved to tears countless times. But now that the child's injection is about to run out, I have to think about the next step. So I turn to the society again, I know this is not a long-term solution, but I believe that one day the price of special drugs will be reduced to an acceptable range for ordinary people, so that my children can grow up. Therefore, I kindly ask you to help me tide over the current difficulties again, the rest of my life can be expected, and I am willing to repay the society with my life.
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