Last year, Nosinagen Sodium Injection was included in medical insurance, which is a long-awaited "event" for patients with spinal muscular atrophy
Jenny Bao, who was once diagnosed with Spinal Muscular Atrophy (SMA) and "doesn't live beyond 4 years", is now approaching 21.
During the long hours of being "frozen" in bed, she battled disease, learned with her head, and wrote with her thumb.
This time last year, Xinhua Daily Telegraph reporter approached Bao Jenny for the first time.
She was lying on a bed of less than two square meters, her body degenerated to the point where only the thumb of her right hand could move.
Now, using the "special medicine", she can shake her wrist under the control of her brain, and gradually feel the small but gratifying progress of her body.
The hope of regaining "control" of life
"The scoliosis is so severe that there is no normal anatomical structure." said Bao Jenny's attending doctor, Lin Zhongdong, deputy director of the Children's Neurology Department of the Second Affiliated Hospital of Wenzhou Medical University, "trying for a successful injection."
The eyes of the media, doctors, and family members look in the same direction through the glass.
"Success!" The crowd suddenly cheered.
On January 1, 2022, the first day of the new medical insurance catalogue, Bao Jenny, a girl from Wenzhou, received the first injection of Nosinason sodium.
Father Bao Zongfeng called his wife.
Bao Jenny did not make a sound immediately.
She held back her tears, her facial features twitching uncontrollably.
After a few seconds, she whispered "I miss you" to her mother on the phone.
Tears kept streaming down, and a tissue was spread on the bed.
After a while, she told reporters: "My biggest wish is to sit up and hug Mom and Dad."
So far, Bao Jenny has received three injections.
After the first stitch, the strength of the left hand has increased and can be erected for a short time; after the second stitch, the breathing becomes smoother and the mouth can be opened more; after the third stitch, the left hand can stand on the arm and slowly swing the wrist , the right hand also increased some strength.
Bao Zongfeng excitedly recorded every change of Jenny with video.
"Move it", "Try it a little faster", slender arms, shaking awkwardly on the screen, again and again.
Before taking the medicine, she felt that "God has been depriving me of what I have, whether the function of my body is good, or the trajectory of my life."
Now, she feels that the swinging wrist is like a signal, as if life can be controlled by herself again.
survive hardships
"For more than ten years, we have gone through untold hardships for this moment." Bao Zongfeng said.
In December 2016, Nosinagen Sodium Injection was approved in the United States.
This is the world's first disease-modifying drug targeting the causative gene of SMA. Through intrathecal injection, the drug is directly delivered to the cerebrospinal fluid around the spinal cord, thereby improving the patient's motor function and changing the disease process.
In September 2018, the injection was included in the priority review and approval process by the State Drug Administration.
In February 2019, the injection was approved in China and then officially launched in mainland China.
At that time, the price threshold of 700,000 yuan per injection had shut out countless patients.
As far as the treatment is concerned, 6 injections are given in the first year, and 3 injections are injected every year thereafter, which will be maintained for life. Once the drug is stopped, the patient's body will continue to deteriorate.
Waiting for drug prices to drop is a daily suffering for families of SMA patients.
"The child is constantly degrading. We watched Bao Jenny go from being able to walk, to sitting, to lying down, and there was nothing to do." Bao Zongfeng often felt regret, frustration, and self-blame.
What supports them in sending Jenny Bao to rescue is a far-reaching belief-to save her life and survive until the day when she can use the medicine.
On December 3, 2021, Nosinagen Sodium Injection was included in the medical insurance.
In the SMA patient group, everyone's unspoken joy turned into tears.
Everything is a gift
"Actually, the first reaction when I first learned that I could take the medicine was very calm, and I always felt that it was not real." Bao Jenny recalled.
Bao Jenny was diagnosed with SMA when she was one year old. Because her body was as weak as a sponge, patients with this disease were called "Sponge Baby".
When she was two years old, Bao Jenny was admitted to the intensive care unit for the first time because of a serious lung infection.
The illness left her completely incapacitated in her lower limbs.
Jenny Bao likes school very much.
In the sixth year of elementary school, she was reading in a wheelchair, and her grades were among the best.
In April 2013, when she was about to graduate from elementary school, she was sent to the intensive care unit twice in a row, and her upper limbs also lost the ability to exercise, and she could no longer hold a pen.
Physical stillness strengthens intellectual freedom.
During her illness, Bao Jenny taught herself humanities courses and several foreign languages, operated a computer with her fingers and an eye controller, created dozens of lyrics, more than 100 poems, and published a collection of poetry works.
She shared with me a little poem she wrote recently, "The Keys", "The mind is like a warehouse, which holds the whole world in it. As the owner of the warehouse, I can't find any key to open the door." She said frankly, The mood is not very good recently.
"It's an old problem, pressure from all sides, and the impact of this body on me. But I've been trying to adjust myself, listening to music, reading books, and chatting with friends."
After taking the medicine, her condition has eased, and she is happy, but at the same time, there is also a faint sadness.
The essence of this sadness is still a sense of powerlessness about one's own destiny. "I admit this sadness and don't pretend to be optimistic. But this sadness will also turn into strength." Therapy can stimulate the strength of muscles, but there is still no way to make She reverted to a "normal ordinary person".
She has a clear understanding of her physical condition, and "it's very content to be able to take off the ventilator."
Minimize yourself, so everything gained becomes a gift.
"I can feel the kindness of many people who love me, friends, family, and strangers." Bao Jenny said, "I don't think this is what I deserve, so I'm always grateful."
Paper butterflies also fly against the wind
Bao Zhenni said that she hopes to promote the improvement of the educational deficiencies of disabled groups in the future.
In her opinion, the barrier-free facilities across the country are still not perfect, and there are not many normal schools that are willing to accept students with disabilities. The educational resources for the youth with disabilities are relatively scarce, making it even more difficult for them to find employment.
But she believes in the power of education.
She believes that in terms of mental work, if they can receive a good education, the disabled may not have the opportunity to be self-reliant.
In the world of mind and heart, she is no different from any wise and agile girl.
For several years, she was connected to the larger world through her phone and computer.
She has read many books, taught herself Japanese, French and English, and is able to read original books.
She also became good friends with some patients and online classmates.
Talking about the luck and misfortune she experienced, she said, "I don't feel unfortunate, I just experienced the inconvenience of life earlier and more. Because I am inconvenient, everyone is willing to make it convenient for me, this kindness is my Good luck."
Bao Jenny's net name is "Paper Butterfly".
She saw an origami butterfly tutorial and thought it was beautiful.
On the Internet, people with scoliosis are kindly called "butterfly babies".
The wind can blow away a piece of paper, but not a flying butterfly.
Butterfly made of paper, flapping its wings and flying against the wind.
(Zheng Mengyu)