"This year I want to go to Jinan Zoo again to see elephants, giraffes and lions, buy a panda toy, and eat fish-shaped rice cakes for the Chinese New Year. ”
This is the 2024 New Year's wish of Xiaoshi, a child with spinal muscular atrophy (hereinafter referred to as "SMA"), but his wish to eat rice cakes was rejected by his mother. Mother Liu Qing (pseudonym) said: "Rice cakes are not easy to digest, let's eat them when we grow up." ”
On the eve of the Spring Festival, the Chao News reporter saw Xiaoshi who was taking a rehabilitation class in Jinan Fuyuan ** Hospital.
This is the sixth year since he was diagnosed with SMA, and the family has gone from knowing the disease, to knowing the disease, and now fighting against the disease, all of which are inseparable from the persistence of Xiaoshi's parents.
Liu Qing said: "Our idea is very simple, we want Xiaoshi, a child, to put all our heart and soul on him, and do our best." To Liu Qing's relief, it was right to choose rehabilitation ** plus SMA special drugs at the beginning.
Small stones are being rehabilitated by Yu Xuan.
It used to be a "sky-high needle" SMA special drug.
At the end of November 2018, Xiaoshi, who was almost 11 months old, was diagnosed with SMA, also known as ALS in infants.
In 2019, SMA special drugs passed the domestic approval, but the official price was 700,000 yuan for one injection, until January 2021, when the price of nearly 700,000 yuan for one injection was reduced to 550,000 yuan a year for six injections. Xiaoshi's family scraped together 550,000 yuan, and finally let Xiaoshi get the first injection of special medicine.
Fortunately, on December 3, 2021, the National Medical Security Administration announced the results of the adjustment of the 2021 National Medical Insurance Drug Catalog, and 7 rare disease drugs entered the medical insurance catalog through negotiation. This includes the special drugs of **SMA.
In October 2022, nearly a year after the SMA special drug was included in the medical insurance, Xiaoshi's father Ma Daxiang (pseudonym) told the Chao News reporter that after the special drug was included in the medical insurance, Xiaoshi's first injection was paid for 190,000 yuan, the second shot is at your own expense60,000 yuan, which greatly reduced the medical expenses of the families of children with SMA.
Even with special drugs, Liu Qing and Ma Daxiang have never relaxed Xiaoshi's rehabilitation, "I think exercise is the most important, and it is still useless to get injections and not exercise." Liu Qing believes that human muscles must be moved every day and used every day, not to mention small stones.
Talking about the past, Liu Qing still remembers the appearance of Xiaoshi: "Before the rehabilitation injection, it was like this child had no bones, and if you let him sit on his back, he would soon fall to both sides." "Nowadays, the little stone can stand and walk on his own in corrective shoes.
Leg press, leg lift, foot lift, leg release, hand lift, grip ......All the small actions in the lives of ordinary people are the main content of the Little Stone Rehabilitation Class, which is held every half an hour and at least 6 classes a day. Liu Qing said that in the more than five years since Xiaoshi was diagnosed with SMA, the rehabilitation class has never been left behind.
Photo by Yu Yu in the small stone rehabilitation class.
Little Stone is 6 years old.
At the end of the two-hour rehabilitation class in the morning, Liu Qing and her grandmother would go home with a 33-pound small stone, eat a simple lunch, and then let the little stone wear knee-high corrective shoes, stand for a while, take a nap, and then go back to the rehabilitation class in the afternoon. Looking at the little stone that worked hard to learn to stand and walk, Liu Qing said with a firm look in his eyes: "This is a child who was sentenced to 'death' by a doctor and will not live to be two years old, but he has just passed his 6th birthday recently." ”
Liu Qing said that Xiaoshi is a little stubborn, like his father, persistent in things, and often cries because of poor rehabilitation actions, "He is a strong child, sometimes he can't do it in a hurry, but he won't admit it." ”
Although his mother always loves to "complain" about the little stone, he loves to hug and kiss his mother the most, and in his immature words, he has a firm attachment to **, he will show off his ** achievements and say, "You see that my arm can still be turned over like this, and I can lift it so high." In fact, what happened at home, Xiaoshi saw it in his eyes, remembered it in his heart, and silently used the results of ** to repay his family's efforts.
Photo by Xiao Shi and his mother Liu Qing Yu Xuan.
Behind these proud show-offs, there are countless tears, sweat and gritted teeth that have flowed through the small stones, as well as the insistence and requirements of the "ruthless" of parents day after day. Liu Qing said that ** is already the most daily part of Xiaoshi's life. "From passively crying**, to now I will take the initiative to ask for ** exercise at the end of the day. ”
For 365 days, Xiaoshi's rehabilitation has never been slack, but during the Chinese New Year and the first day of the New Year, his parents will give Xiaoshi a half-day vacation. Little Stone likes to go to the New Year's fair, and he says he wants fluffy dragon toys: "Isn't this the Year of the Dragon!" Liu Qing said arrogantly: "No problem! ”
But when it comes to eating, Liu Qing will not be soft-hearted. Because of his illness, Xiaoshi's food is very simple, so his favorite braised pork is restricted. Xiao Shi said that he could eat a large piece of braised pork cooked by his grandfather, and because of this, he was often forbidden to eat meat many times due to indigestion. Liu Qing said that the stone is a little gluttonous cat, "because the digestive function of SMA children is not very good, so they are prone to indigestion." ”
In the new year, looking at the little stone that is progressing little by little, her mother Liu Qing has a new goal: "I hope that the little stone can take off the corrective shoes, stand alone, and even throw away the booster without having to walk forward." Liu Qing said, even if Xiao Shi's posture is not so good-looking, or even very slow, "Although Shi didn't say it, I know that he definitely wants to play with normal children, go to school together, and eat KFC McDonald's together." ”
*: Chao News.