When I came to Liu Shuya's home in Xiaozhuzhuang, Dongshi Ancient Town, Jizhou District, Tianjin, two-year-old Shuya had just woken up, and Shuya's mother was sitting on the kang to wash Xiao Shuya's face and body. When washing her face, Xiao Shuya's "elephant trunk" was not taken off. Because of the rare genetic disease "spinal muscular atrophy (sma)", Xiao Shuya became a robot baby, an elephant trunk baby, wearing a ventilator 24 hours a day.
In March 2019, Xiao Shuya fell to the ground in the expectation of her parents and her brother, who was a few years older. However, the joy of the new birth has not yet dissipated, and a month of Xiao Shuya has unusual symptoms, suddenly becoming weaker and weaker when she should have looked up and tried various hand and foot movements. Mom and Dad took Xiao Shuya to Baodi Hospital for examination, and waited for the shocking news, "spinal muscular dystrophy" sma i type, if not subjected to special treatment, the maximum survival time is not more than two years. The doctor said: "It can be treated, but a special drug needs 700,000, and it also needs the assistance of various machines in the later stage." ”
When Xiao Shuya was 7 months old, her condition became more and more serious, and her parents took the child to the Beijing Children's Research Institute and sent Xiao Shuya to the iCU ward. Severe pneumonia, severe respiratory failure, breathing difficulties, Xiao Shuya was once critically ill, relatives and friends have advised Shuya's parents to give up, the follow-up cost is too high. But for her parents, although Xiao Shuya came to the world for a short time, she could not give up. When Xiao Shuya was closest to death, her mother hugged Shuya and said, "Child, if you are really tired, your mother respects your choice, and your mother never regrets giving birth to you; I'm sorry, my mother didn't give you a healthy body, if there is an afterlife, let your mother love you again." In the end, Xiao Shuya survived with difficulty, and as a parent, there was no reason to give up.
In order to take care of Xiao Shuya more conveniently, but also in order to save hospitalization costs, Shuya's father did odd jobs near home, slowly bought a ventilator, a sputum coughing machine, a nebulizer, a suction sputum, an oxygen concentrator, a monitor, etc., and the home became an intensive care unit; Shuya's mother also became a professional nurse, 24-hour nursing, nasal feeding, atomization, suction, sputum cough, rescue... For two years, he was isolated from the world and devoted himself to taking care of his children. The young mom and dad were not knocked down by the rare disease, and the smiles on the wedding photos in the room were still on their faces, because no matter how difficult it was, the child was still alive.
It is the season of harvesting wheat, and Shuya's father will help open the machine to loosen the soil and earn some change in the middle of the night after Little Shuya sleeps, when someone needs to work shifts. A few acres of land in the family, but as early as Xiao Shuya went to Beijing Hospital, she contracted to someone else, and the land use right for 10 years was exchanged for 35,000 yuan, which was only enough for Xiao Shuya to be hospitalized in Beijing for a week. Shuya's mother is a person who loves life, the yard is full of green plants, there is no time to take care of them in the past two years, the plants are self-destructive, some have died, and some have also blossomed.
SMA is not a terminal illness, it "as long as the money does not die", there are medicines to be treated, but it is a price that ordinary families cannot afford at all, "they can't afford to eat imported sky-high drugs, they can only wait for death, or even suicide." In 2019, the special drug for the treatment of SMA, "Northinal Sodium Injection", was listed in China, with a shot of 700,000 yuan, which needed 1.4 million a year and needed to be used for life, but it was the only hope for children with SMA. In January 2021, the price of special drugs was reduced, 550,000 yuan per year, although it is still a sky-high price, but it makes the hope of SMA children more. Zhejiang Province's inclusive commercial supplementary medical insurance has participated in the cost payment of SMA special drugs, and perhaps Xiao Shuya can wait until the price of drugs continues to be reduced, and even included in Tianjin medical insurance. Before that, she needed 550,000 potent pills a year to keep her alive.
With the help of her parents selling property and treatment and from all walks of life, Xiao Shuya has given 4 injections of medicine and immediately needs the 5th injection, but her parents have been powerless. If you are willing to help Xiao Shuya, you can long press the identification QR code to view the project details and make a donation. If it cannot be recognized, you can save the two-dimensional code to the mobile phone album, open and scan, and select the two-dimensional code from the album to scan and identify. The project was initiated by the China Social Welfare Foundation 919 Major Illness Relief Project, and was launched in the Internet fundraising information platform "Waterdrop Public Welfare" designated by the Ministry of Civil Affairs, and was responsible for the review, implementation and information feedback of the project. The final interpretation of the project belongs to the China Social Welfare Foundation. Supervision Phone: 4009-010-919.
The "Photosensitive Project" bridges public welfare photographers, charitable organizations, and fundraising platforms, publishes pictures and stories of families in distress, and helps raise donations. The plan is a photo public welfare project jointly initiated by today's headlines, the China Photographers Association, the China Children's Charity Relief Foundation, the Chinese Welfare Foundation, the China Social Welfare Foundation and other charitable organizations with public fundraising qualifications. If you have difficulties, you can send a private message to the official headline number of the "Photosensitive Plan".