The first beneficiary family of "Soul Bargain Medicine" returned to visit in the Spring Festival

Xinhua All Media + 丨 "Children's progress makes the whole family see hope" - the first beneficiary family of "Soul Bargain Medicine" New Year's return visit

　　Xinhua News Agency, Jinan, January 18,

　　Xinhua News Agency reporter Shao Luwen

　　Like more than 30,000 patients across the country, Li Jiashu, a 5-year-old boy from Zaozhuang, Shandong, is unable to sit or walk alone due to the rare disease spinal muscular atrophy (SMA for short).

Last year, the much-watched "SMA sky-high price life-saving drug" Nosinagen sodium injection was included in the medical insurance catalog from 700,000 yuan per injection to 33,000 yuan after "soul bargaining". Li Jiashu was lucky to be included in the medical insurance list The first beneficiary in the country.

After a year, the reporter made a return visit to Li Jiashu's family.

　　"In the past, when Chinese New Year was approaching, seeing other people's children bouncing around made me feel the most uncomfortable. Last year, the child improved greatly after treatment, and it was the year when the whole family had the most smiles on their faces." Li Jiashu's mother Li Xiuhua said.

　　Li Xiuhua told the reporter that in December last year, Li Jiashu received the sixth injection of Nosinagen Sodium Injection and completed the whole-year treatment plan. Can stand alone for a few minutes.

The child's strength has also been greatly improved. He could not hold things with his hands before, but now he can use chopsticks and brush his teeth by himself.

Li Jiashu performed standing training with the help of his mother.

Photo by Xinhua News Agency reporter Shao Luwen

　　Yin Weixiao, the attending physician of the Pediatric Intensive Medicine Department of Zaozhuang Maternal and Child Health Hospital, said that from the perspective of various indicators of physical condition, Li Jiashu's treatment effect in the past year is obvious. .

In the future, it will be necessary to inject 3 injections of drugs every year and continue to carry out rehabilitation training.

　　This year, the warm current gathered from all walks of life also pushed the family forward.

As the New Year is approaching, the local Civil Affairs Bureau, sub-district office and other departments also visited Li Jiashu's home to express condolences.

Li Jing, deputy director of the Civil Affairs Comprehensive Service Center of Shizhong District, Zaozhuang City, said that over the past year, the civil affairs department has integrated medical insurance, disabled people's federations, charity and other forces to carry out targeted assistance to Li Jiashu's family, various subsistence allowances, subsidies, etc. There are more than 4,000 yuan per month, and nearly 40,000 yuan in charitable assistance and temporary assistance.

In addition, the relevant departments also purchased wheelchairs, nursing beds and some rehabilitation aids to ensure Li Jiashu's family life is guaranteed.

Li Jiashu draws while standing with the help of equipment.

Photo by Xinhua News Agency reporter Shao Luwen

　　The reporter also saw at Li Jiashu's home that his elder brother Li Guoliang had also been treated with Nosinagen Sodium Injection last year.

"Guoliang will soon be 18 years old, and his physical condition is very poor. Before that, the family conditions did not support the treatment of the two children. Last year, with the coordination and help of the medical insurance department, Guoliang could also be treated. This is what the whole family wanted. I dare not even think about it." Li Xiuhua said.

　　"As long as there are relevant policies, we cannot give up any child." Mao Shuai, deputy director of the Shizhong District Medical Insurance Bureau of Zaozhuang City, told reporters that in May last year, he learned that the China Primary Health Care Foundation was treating several spinal cord patients nationwide. After the news that the family of the muscular dystrophy child was rescued, we actively contacted the relevant departments, and immediately helped Li Jiashu's brother apply for the opportunity to use Nosinagen Sodium Injection for free. So far, 5 injections have been completed.

　　"There are so many people in the society who care about us, and the child is getting better day by day, which makes the whole family look forward to the new year." Li Xiuhua said that for their family, the past year was a warm one. The help from all walks of life gave the child the "strength" to stand up.

　　Li Xiuhua also said that in the new year, the child's wish is the same as in previous years, hoping to stand up as soon as possible, walk early, and carry a small schoolbag to go to school.

Both she and the child firmly believe that this day will definitely come true.

(Xinhuanet)