In 2015, Zhang Tianle, a 14-year-old junior high school student, suddenly went dark in the school corridor. After hitting a classmate, he fell down the stairs and was sent to Hunan Second Xiangya Hospital.
(Tim Le in the hospital bed)
“This child in your family is ‘Gaucher disease‘.” The doctor told Zhang Tianle’s mother Yu Jianying, “There are medicines to cure, but the cost I’m afraid you can’t bear it, so be prepared to give up.”
“Gaucher disease” is a rare disease that cannot be detected by routine birth tests. Currently, there are only about 400 known patients in China.
Children with this disease will develop hepatosplenomegaly and other complications such as anemia, thrombocytopenia, and growth retardation due to a lack of a metabolic enzyme in the body.
What the doctor said is a special medicine. If you don’t inject it, your belly will be as big as a pregnant woman, and you will eventually die from multiple organ failure.
Yu Jianying feels that she has lost a son, and she does not want to lose Tim Le.
Yu Jianying’s family is from Lucheng Village, Lucheng Town, Yueyang, Hunan, and is a low-income household.
(Tian Le’s father Zhang Yuehua)
Yu Jianying’s husband, Zhang Yuehua, has five sisters, and Zhang Yuehua is the only male in the family. After marrying Yu Jianying, the family has two sons, the eldest son is Zhang Jin, who is 6 years older than Tian Le. Everyone said that Yu Jianying was lucky.
But in the year Tian Le was born, the eldest’s head became bigger and bigger, and the doctor said, “The child has hydrocephalus, the position is not good, there is no way to cure it”.
(A group photo of Yu Jianying and his two sons, the eldest son Zhang Jin is no longer alive)
From then on, Yu Jianying took care of the newly born Tim Le and Zhang Jin, who was getting worse.
Tian Le had a bulge in his abdomen when he was more than 2 years old. The local hospital said it was schistosomiasis, but no matter how he was treated, there was no relief.
(Tian Le’s photo before spleen surgery)
Examination results showed that Tim Le’s spleen was abnormally enlarged, the cause of which was unknown, and the doctor did not know what medicine to use.
In 2007, Tim Le was 6 years old. Her limbs were thin to dry wood, but her stomach looked like a pregnant woman who was 9 months pregnant. Normal walking was a problem. Her spleen was infarcted. life. As a last resort, Yu Jianying took her child to a hospital in Changsha to remove a 7-pound spleen.
(Tian Le’s left abdomen left a scar from spleen incision)
Get rid of the burden of the big belly, Tian Le gradually became happy, and his personality became lively. He spent seven or eight years of calm and normal time, but when he was twelve or thirteen years old, he often Said to my mother, “I feel that my eyes are a little hard to see, and I have to get very close to see.”
Yu Jianying never imagined that this is a warning to the body after the child has had his spleen removed. She did not know that after the splenectomy, Gaucher cells would transfer to other organs, possibly causing complications such as liver necrosis and blindness.
The mystery of the disease surrounding the child will not be fully solved until he suddenly falls blind at school and falls, but it is too late.
（Yu Jianying）
In 2016, the eldest son Zhang Jin passed away.
Yu Jianying was completely overwhelmed by the successive blows and washed her face in tears every day. “I now rely on dyeing my hair to cover my white head. After Zhang Jin left, I always cry. Maybe because I cried too much, my vision dropped from 1.0 to 0. I can’t see anything clearly with my left eye…”
In 2017, Yu Jianying learned that in Hunan, there were six or seven families with children with Gaucher disease like hers.
(other children with Gaucher disease in Hunan)
The doctor told them that as a rare genetic disease, Gaucher’s disease is not incurable. If they can continue to take stable medication, they will be injected with insulin like diabetics, and they will behave like normal people. People live like that.
But medicines for Gaucher disease are almost always expensive.
Take the special drug imiglucerase as an example. According to the doctor’s advice, one drug is used per 9 kg of body weight. For an adult weighing 140 catties, the dosage is about 8 per month. . Calculated at the price of 23,000 yuan, the annual cost exceeds 2 million yuan. Gaucher disease patients need lifelong medication. This economic burden is beyond the reach of most Chinese families…
(Imiglucerase, a special drug for the treatment of Gaucher disease)
Yu Jianying heard that the special medicine for Gaucher disease is included in the medical insurance in Shanghai, Zhejiang, Shanxi and other places.
“With medical insurance, I will work harder at home, and I can barely get my child to get medicine. If Tianle does not receive treatment, it is very likely that other organs will have problems, and most of the spleen will be removed. All children with Gaucher disease will have enlarged liver and turn into a big belly again. Although Tian Le has not yet experienced this situation, he is now blind in both eyes. It is not known whether he can regain his sight after taking the medicine. But if he does not use it, his life will be guaranteed .”
(It is obvious that Tim Le’s eyes have turned gray)
Since then, Yu Jianying and other Gaucher disease families in Hunan have continued to go to Changsha to run the medical insurance policy, hoping that Hunan Province can follow the example of Zhejiang and other places and include Gaucher disease medication into medical insurance , give hope to several children.
“Many times, the children run with us. Whether it is the sweltering heat or the cold winter, we do not dare to rest for a month. Because of this disease, if it is not covered by medical insurance , just a few of our families, no matter how hard we work, we can’t afford it.” Yu Jianying said.
On March 11, 2020, while the impact of the epidemic in most parts of China has not yet dissipated, cheers suddenly erupted in the WeChat group of families with Gaucher disease in Hunan Province.
The province issued a document that day, starting from April 1, the medicine for Gaucher disease entered the medical insurance system in Hunan, and the government reimbursed 70% of it, capping a ceiling of 470,000 yuan. Like Shanghai and Zhejiang, more than 90% of the reimbursement is reimbursed, but these families finally see hope for life.
(Tan Le is at home)
Yu Jianying could not contain her excitement when she got the news. She rushed into her son’s room and shouted to Tim Le: “Son, you are saved!”
“What helped?” Tim Le looked puzzled.
“The medicine is in the medical insurance, in the medical insurance!”
Yu Jian’s English was incoherent. At that moment, she didn’t know whether she was crying or laughing. The mother and son were just hugging each other in the living room.Can’t be calm for a long time.
(Learning that the medicine for Gaucher disease has entered the medical insurance in Hunan, the mother and son have been together for a long time.)
On April 23, 2020, Zhang Tianle, together with several other Hunan Gaucher disease patients, injected the first special medicine in his life in Changsha.
(Tian Le was treated in hospital)
Since then, every month, Tian Le has to come to Yueyang No. 2 Hospital from the village to register a special effect drug. According to the medical insurance policy, under the current situation of insufficient medication, Tianle still needs to pay 7,000 to 8,000 yuan per month for lifelong medication, which is still an extremely heavy burden for this low-income family.
However, the pain of losing a child is still deeply imprinted in Yu Jianying’s mind. In any case, she can’t let Tian Le leave her side again
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(Yu Jianying and Tim Le)
“I now hope that in my lifetime, I can watch Tim Lek live a healthy and happy life. Although our family only has a monthly income of three or four thousand yuan a month, we do our best With all our strength, we will keep our son on the medicine.” Yu Jianying said.
(Zhang Tianle in the attic of his home)
In the years since he lost his sight, Zhang Tianle has become accustomed to living with the darkness. In an unfamiliar environment, he will subconsciously high-five, so that his ears can perceive the state of the environment.
(Zhang Tianle is “listening” to TV)
At home, he can already confirm the position by colliding with his body without the need for a guide stick. Turning on the TV, he can also understand the latest news, variety shows and TV series. He said that he loves historical stories, and he listens to them every day, and even asks his mother to tell them to him.
(Zhang Tianle is listening to his mother tell a historical story.)
He thought to himself that maybe one day, his eyes could regain his sight, so he could better embrace the world…
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