February 26, the Lantern Festival, the southern part of the country turned warm and cold, and the weather began to turn overcast.
In the pediatric ward of Maoming People’s Hospital, 31-year-old Du Jia breathed a sigh of relief. The 10-month-old son “Mi Li” finally got his pneumonia under control and could be discharged home. This Spring Festival Their family spent in the hospital.
Every time a common lung infection is like a big enemy, the whole family is because “Rice” suffers from a rare disease SMA – Spinal Muscular Atrophy. Due to the weakness of the respiratory muscles, there is no cough. Sputum capacity, even a small phlegm blockage can be fatal.
(despite poor breathing and swallowing ability, “rice grains” have the same intellectual and emotional.)
In April last year, the shadow of the new crown epidemic shrouded people’s heads, and the arrival of Erbao “Rice Grains” brought hope to Du Jia and her husband. “Rice” loved to laugh when it was born, and its big eyes always looked around smartly, which was very endearing. However, from the third month, Du Jia found that the child did not like to move, the limbs were weak, the breathing and swallowing ability was weakened, and the crying was not as loud as it was at first.
(“Rice grains” have no ability to expectorate due to respiratory muscle weakness, and small phlegm Fluid blockage can be fatal.)
After ruling out cerebral palsy and other diseases, Du Jia followed the doctor’s advice and took her child to Shenzhen for genetic testing. During the waiting period, she checked the information on the Internet and learned that SMA is a gradual loss of movement. A rare disease of neurons, but she always took a chance and felt that she would not encounter a one in ten thousand chance. When he got the SMA diagnosis report, Du Jia felt that the sky was falling. She asked the doctor if the disease could be cured? The doctor just asked her, what occupation are you and your husband engaged in? At that moment, Du Jia realized that this disease should cost a lot of money.
(The oximeter monitors the physical condition of the “rice grains” at all times, once the breathing is disturbed , an alarm will be issued.)
October 29, 2020, Du Jia will never forget this day. In Shenzhen Children’s Hospital, she and her husband carried 11 bank cards, which, in addition to their savings and loans, also paid There are pensions, provident funds from both parents, loans from relatives and friends, and even the 30,000 yuan savings saved by the 90-year-old grandma in her lifetime. The couple shed tears while swiping their cards, and the pharmacy representative on the side couldn’t help crying. 699,700 yuan, from an ordinary family with an annual income of less than 100,000 yuan.
(Du Jia is queuing in the hospital to go through the formalities for “rice grains”.)
Nosinasena injection is the world’s first precision targeted therapy drug for SMA. It was approved for domestic marketing in 2019, bringing a first-line life to children with SMA. At the same time, each injection is 699,700 yuan The price of the drug also set a new record for Chinese medicines. 6 injections in the first year, 3 injections per year thereafter, lifelong medication.
Even with the “buy one, get five free” policy, the money raised by the whole family is only “rice grains” for one year’s treatment. The pharmacy representative was well aware of their difficulties and repeatedly told Du Jia that as long as the package was not opened, the medicine could be returned. And Du Jia had already decided in her heart that she brought the child into this world and could not let go.
Du Jia began to study nursing. She transformed her home into a small ICU ward, from ventilator, expectoration machine, oxygen generator, to oximeter, suction machine, nebulizer , all fully configured.
(“grain of rice” treated at home with phlegm vest with spinal muscularis Atrophy, a rare disease with progressive loss of motor neurons.)
Aerosolization, back pat, expectoration, sputum suction, feeding, and 24-hour blood oxygen and heart rate monitoring are required every day, with an average of 8,000 back pats. When there is a lot of phlegm, one day The number of sputum suctions was as high as 20 times, and in case of severe pneumonia, an ambulance had to be called immediately to be taken to the hospital. In the ten months after the child’s onset, Du Jia never dared to leave for half a step, and she did not dare to fall asleep even in the middle of the night. Once the oximeter alarmed, she needed to activate the sputum machine and suction machine immediately to help the child remove the sputum. Suck it out a little bit…
(Maoming People’s Hospital, Du Jia assisted nurses in sucking sputum for “rice grains”.)
In addition to the physical fatigue, the care of the elders and relatives and friends who borrowed money for the progress of the child’s rehabilitation also put Du Jia and her husband under great mental pressure. I feel that the upper limbs of “Rice Grain” have gradually become stronger, but this “slowness” cannot meet everyone’s expectations for “high-priced medicine”. In addition, Du Jia felt guilty for not taking care of her eldest daughter.
(At night, the tired husband lay down and rested, Du Jia was still preparing for “Rice Grains” “Do nursing.)
Under the leadership of the Meier SMA Care Center, Du Jia joined the SMA patient group and got to know many parents of children. Shengna injection is covered by medical insurance.
People in the patient group come in and out, and everyone is tacit. Whenever there is information about resale or gift of second-hand items such as ventilators and sputum machines, it means that another patient has not can survive. The oxygen generator and atomizer at Du Jia’s home were donated by a parent of a child in Jiangsu. “Our child failed to survive, and I hope your child will be lucky…” The parent said to Du Jia.
(After more than ten days of hospitalization, “Rice Grain” controlled the lung infection, Ready to be discharged home.)
Entering 2021, the one-year treatment cost of Nosina Sena injection has dropped to about 550,000 yuan. On January 27, Guangzhou’s first case of SMA covered by “Sui Suikang” The child was discharged from the hospital, and the reimbursement rate was nearly 70%, saving about 370,000 yuan, which gave Du Jia’s family hope. Platforms such as Waterdrop and Easy Funding have also received donations from caring people, which relieved the family’s financial pressure to a certain extent.
Before leaving the hospital, the pediatric medical staff of Maoming People’s Hospital handed over the donations and gifts from the whole hospital to Du Jia. During the Spring Festival, everyone forged a friendship, and the doctors and nurses liked the cute Small “grains of rice”. In April, when “Rice” turns one year old, with everyone’s blessings, he will go to Shenzhen to receive the fifth drug injection.
“If the child is alive, there is hope!” Du Jia said. This is the stubbornness of a mother of a child with SMA.
