Recently, a video of a father building a snowman sent to the bed of a seriously ill child has aroused the attention of netizens. In the video, the child lying on the bed stared at the snowman and turned his eyes, and after touching the cold snowball, he subconsciously shrunk his small hand, and netizens directly called "the screen is full of love". On February 10, the child's father, Yu Jianpeng, told the Beijing Youth Daily reporter that Duoduo, who is more than 2 years old this year, was diagnosed with the rare disease spinal muscular atrophy when she was 42 days old. Because of illness, the child is in an enclosed space for a long time, and she will be particularly curious when she sees new and curious things. "Although she was sick, we wanted to take care of her to the best of our ability and give her everything we could. I don't know what the future holds, but I'm content to be able to live every day of the present. ”
Recently, the video of the father building a snowman sent to the child's hospital bed has aroused the attention of netizens. In the video, the child's room is like an icu ward, with all kinds of equipment, ventilators, spit coughers, and suction devices. The young child lay on the bed with a plastic tube in his nose, and the father of the child piled a small snowman in the basin and put it in front of the child's bed. The father decorated the eyes of the snowman with strawberry leaves, the hair and scarf of the snowman with red Chinese knots, and although the child lying on his side could not move, her eyes stared at the snowman and turned, touching the cold snow, and her fingers subconsciously retracted a little.
In another video, Duo Duo sees a small orange lamp in warm yellow, her eyes widen, and she shows a shallow smile. The warm love conveyed by the video touched many netizens, and many netizens commented that they hoped that the child would get better quickly and go to see the outside world, and when it snowed next year, the child went outside with his parents to build a snowman.
The child in the video, named Duoduo, is more than 2 years old and was diagnosed with spinal muscular atrophy when she was 42 days old, a rare inherited neuromuscular disease characterized by the degeneration of motor neurons in the anterior horn of the spinal cord, resulting in severe muscle atrophy, weakness and loss of progressive motor function, ranking first among children with lethal genetic diseases in children under 2 years of age.
"Although she was ill and could not move, her intelligence was not affected. In an enclosed space for a long time, she was curious about novelty. We also want her to feel the outside world. The child's father, Yu Jianpeng, said that he usually buys toys for the child, and there are also caring people who send her crystal balls.
Yu Jianpeng recalled that at the beginning of Duoduo's diagnosis of illness, the family almost collapsed, but there has been no hope of giving up treatment. In November 2020, he and his wife came to Beijing from Gansu with their children and spent about 700,000 yuan on the first dose of Nocinasin sodium injection with the help of a number of caring people. Later, with the support of the policies of the relevant departments, Duoduo was vaccinated with 5 injections successively. In November 2021, with the efforts of drug negotiators in the national medical insurance catalogue, the price of Nocinasine sodium injection dropped to 33,000 yuan per injection. Yu Jianpeng said that after medical insurance reimbursement, the actual cost per needle is about 10,000 yuan.
In January this year, Duo Duo injected the 7th dose of Nocinasine sodium injection at the Children's Emergency Center of Gansu Provincial Maternal and Child Health Hospital. She is also the first child in Gansu to use the drug to be treated after the "sky-high drug" Nocinasin sodium injection of nearly 700,000 yuan in the past entered the medical insurance directory. Yu Jianpeng said that the plastic tube that was originally inserted in Duoduo's mouth was moved to her nose, and Duoduo became more smiling. In the future, Duoduo will also need to continue to inject the drug.
Duoduo's body is gradually recovering. Yu Jianpeng said that in addition to hospital treatment, usual nursing care is particularly important, and they need to do atomization treatment, suction and back patting of the flowers every day. Because Duo Duo can not express their feelings, they must always pay attention to the physical data of Duo Duo on medical equipment, Duo Duo's bed is taken care of almost all day long, his wife resigns to take care of Duo Duo at home full-time, and he and his wife change shifts at night.
Yu Jianpeng said that they have learned about the growth history of other sick children, children may have some accidents at any time, and they do not know to what extent Duoduo's physical condition can be restored in the future. "We just want to take care of her with the greatest responsibility, and we are content to be able to live every day now."
(Beijing Youth Daily reporter Chen Jing)
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