Text/Yangcheng Evening News all-media reporter Chen Hui
Intern Zheng Minshan Correspondent Peng Fuxiang Liang Jiayun
Photo / Yangcheng Evening News all-media reporter Liang Yu
On February 24, in the Neurology Ward of the First Affiliated Hospital of Sun Yat-sen University, Nosinason sodium injection was slowly injected into the body of 16-year-old twin sisters Teng Xiwei and Teng Jirui, although this was their third injection, the family was still as excited and full of expectations as when they were injected for the first time on January 27, and each drop of potion gave the sisters in the wheelchair the hope of getting back on their feet and also shone the sun into the family.
In January 2022, 74 rare disease drugs were newly added to the national medical insurance drug list, including Nosinasin sodium injection for the treatment of spinal muscular atrophy, the price dropped from 700,000 yuan per injection to only 33,000 yuan per injection, and individuals only need to pay a few thousand yuan after medical insurance reimbursement, and the sisters became the first beneficiaries.
Twin sisters Teng Jirui (left) and Teng Jirui (right)
If a woman suffers from a rare disease, there is a 200% chance of misfortune in 1 in 6000
In 2005, the landing of Teng Jiwei and Teng Jirui made this ordinary family in Guangzhou full of joy and laughter. But when they were 1 year old, their mother Xiao Chunguang sensed that something was wrong, and the two children often fell and bruised their knees when walking.
At the age of 3, both daughters were diagnosed with spinal muscular atrophy. This is a hereditary rare disease, with an incidence of 1 in 6,000 to 1/10,000 newborns on the mainland, but unfortunately, the probability of which family is 100%, and for this family it is still double.
"At that time, a doctor told me that if the condition was serious, the child might not live to be 3 years old." The family was beaten, and Xiao Chunguang recalled that she cried for a week, and her life was like walking into a dark tunnel.
Xiao Chunguang once took the child around to seek medical treatment, and did not miss any opportunity to "continue the life" of the child. In the end, Professor Zhang Cheng of the Department of Neurology of Zhongshan First Hospital told her that the typing of the sisters would not have an impact on life expectancy, and it was also a blessing in misfortune. Unfortunately, at that time, there was no "special drug" for spinal muscular atrophy in China, and only other adjuvant treatments could be used to help delay the disease.
Xiao Chunguang's second blow was the day his daughter was in the second grade of primary school. Teng Came home from school as usual, but her legs suddenly couldn't stand up, and the whole person fell to the ground, unable to stand up no matter how hard she tried. A year later, both she and her sister lost the ability to walk and were in wheelchairs.
"Patients with spinal muscular atrophy will slowly deteriorate motor function, will lose the ability to walk, and some actions such as combing their hair and dressing themselves may become more and more difficult." Li Jing, attending doctor of the Department of Neurology of Zhongshan First Hospital, said.
The twin sisters pick up goods at a self-service vending machine
"Mom carried us from small to large"
The 16-year-old flower girl has been in a wheelchair for 8 years, which is difficult and bitter that others can hardly imagine. Xiao Chunguang told a detail, the daughters at home can not be independent of the defecation, they can only wait for their mother to come home from work, often for half a day, the two daughters never complain.
"We were diagnosed at a very young age, and we are actually used to this kind of life." The sisters spoke lightly. But when the reporter asked "what do you want to do in the future", Teng Replied without thinking, "I can get better quickly, my life can take care of myself, and my mother doesn't have to work so hard."
"When I was in junior high school, the classroom was on the third floor, and my mother carried us up and down every day." Because they can't walk, the sisters' living life at home and going up and down the stairs need to be carried.
Xiao Chunguang and her husband carried them from small to large. Their family used to live on the 5th floor, and they had to carry their backs every day before installing the elevator. As the daughters gradually grew up and their weight gradually approached their mothers, Xiao Chunguang gradually felt powerless in the past two years.
When the daughters were in high school, in order to facilitate schooling, Xiao Chunguang and his wife rented a first-floor shop near the school as a temporary "home" for the family.
What makes the couple happy is that the two daughters understand things early and study hard. "From elementary school to now, I have never enrolled them in cram school, and I keep cheering them up, so that they can study hard and cheer well." Xiao Chunguang said.
No matter how tired life is, Xiao Chunguang has never given up his job. She wants to "set an example" for her children – the future depends on personal efforts. During this period, she never gave up, "I believe this is not a terminal illness!" ”
This obsession supported her all the way, while waiting for the "life-saving medicine" while doing rehabilitation training for the women to delay the development of the disease, which is 8 years.
The sisters chatted and laughed in the hospital hallway
"Their feet are finally starting to get a temperature"
Dawn appeared on January 1, 2022, and 74 rare disease drugs were added to the national medical insurance drug list, including Nocinasin sodium injection for the treatment of spinal muscular atrophy. The cost of this drug was once quite expensive, nearly 700,000 yuan / needle, only the first 63 days to inject 4 injections, the next 4 months injection 1 injection, and need long-term injection.
"The cost is astronomical for our family, not to mention two children to fight." Xiao Chunguang told reporters.
After being included in the medical insurance drug list, the cost of sodium northinal was reduced to 33,000 yuan / needle, medical insurance reimbursement plus disability certificate and other treatment, and the last individual only had to pay four or five thousand yuan for a needle, which was no longer out of reach for many families of rare disease patients, including Xiao Chunguang.
On the afternoon of January 27, the two sisters injected the first dose of Nocinasone sodium at Zhongshan First Hospital. "When we got the first shot, we were all happy, especially Mom, who was excited and nervous." Teng recalled her mother's expression at that time, and she guessed that "my mother may be a little expectant and a little worried about this effect."
Due to muscle atrophy, many patients have cold and weak legs. "I used to feel that coolness through my pants. After the first injection, I felt that their feet were finally starting to have temperature. "That little bit of warmth still seems to exist in the palm of Xiao Chunguang's hand, and she remembers every detail after the children have finished the injection." I also saw their hands slowly and smoothly lifted."
Medications can delay the symptoms of muscle atrophy. "Some children can only sit in a wheelchair for a lifetime without medication, but after taking the medication, they may gradually recover their ability to walk; and some children who still have walking ability can delay the degradation of walking ability through medication, and may not need to use a wheelchair." Li Jing said.
The two sisters watched the scenery in front of the floor-to-ceiling window of the hospital
This home "stands" again
"We finally waited for the day, the child was on the medicine, and I saw hope." Xiao Chunguang said that when the spring breeze was full of face, her eyes were full of light, and in her opinion, her home was "standing" again.
Because of this glimmer of hope, the sisters also have more expectations for the future.
"My sister and I grew up and felt the care and affection of many people. Because we have limited mobility, the teacher will take the initiative to come over after class and ask if we need guidance. When it is inconvenient to go up and down the stairs, students will also come to help carry them together. Sister Teng Xirui said that she hopes that she can be admitted to Sun Yat-sen University to study law in the future and help people in need, while her sister Teng Jirui's dream is to enter the disabled federation and use her own strength to give back to the society.
At present, there are more than 30,000 patients with spinal muscular atrophy on the mainland. On January 1, on the first day that rare disease-related drugs were included in medical insurance, nearly 20 patients with spinal muscular atrophy in 11 provinces and cities such as Beijing, Shanghai, Guangdong, Zhejiang, Sichuan, Shandong, Hunan, Hubei, Fujian, Jiangxi, and Henan received sodium treatment for Neucinasin.
"Recently, many patients who have been diagnosed before have come back for treatment, and now there are about 40 to 50, and it is estimated that more and more will be in the future." Li Jing said, "After the drug is included in medical insurance, the burden on patients has been effectively reduced, and these families have rekindled the hope of treatment."
With the continuous improvement of our medical security, more and more families of rare disease patients will "stand" like Xiao Chunguang's home. (For more news, please pay attention to Yangcheng Pie pai.ycwb.com)
Source | Yangcheng Evening News Yangcheng Pie
Editor-in-charge | Wu Flaw