With the use of special drugs, "Sponge Baby" regains the hope of "controlling" life

Last year, Northinalson sodium injection was included in medical insurance, which is a long-awaited "big thing" for the spinal muscular atrophy patient group.

▲ Bao Zongfeng (right) and Bao Jenny read her poems together (taken on April 13, 2021). Photo by Xinhua News Agency reporter Han Chuanhao

Jenny Bao, a girl who was diagnosed with spinal muscular atrophy (SMA) and "can't live to be 4 years old", is now almost 21 years old.

During the long time she was "frozen" in bed, she wrestled with the disease, learned with her mind, and wrote with her thumb.

At this time last year, Xinhua Daily Telegraph reporter approached Jenny Bao for the first time. She lay on a bed of less than two square meters, her body degenerating to the point where only the thumb of her right hand could move. Now, with the use of "special medicine", she can already shake her wrist under the control of the brain, and gradually feel the small but pleasing progress of her body.

Regain control of life's hopes

"Scoliosis is so much that there is no normal anatomy." Dr. Jenny Bao and deputy director of the Department of Pediatric Neurology at the Second Affiliated Hospital of Wenzhou Medical University, Lin Zhongdong, said, "Strive for a successful injection. ”

The eyes of the media, doctors, and family members looked in the same direction through the glass. "Success!" Cheers suddenly erupted from the crowd. On January 1, 2022, the first day of the landing of the new medical insurance directory, Wenzhou girl Bao Jenny received the first injection of sodium from Northina.

Father Bao Zongfeng dialed his wife's phone. Jeanne Bao did not make a sound immediately. She couldn't help crying, her facial features twitching slightly uncontrollably. After a few seconds, she whispered to her mother on the phone, "I miss you."

Tears flowed down, and tissues were laid out on the bed. After a while, she told reporters: "My biggest wish is to be able to sit up and hug Mom and Dad." ”

So far, Jenny Bao has received three injections. After the first stitch, the strength of the left hand is enhanced and can be briefly erected; after the second stitch, the breathing becomes smoother and the mouth can be opened wider and more; after the third stitch, the left hand can stand the arm and slowly swing the wrist, and the right hand also increases some strength.

Bao Zongfeng excitedly recorded jenny's every change with video. "Move," "Shake a little faster and try," slender arms, awkwardly rocking on the screen, again and again.

Before taking the drug, she felt that "Heaven has been depriving me of what I have, whether it is the function of the body, or the trajectory of life." Now, she feels that the wrist that can swing is like a signal, as if life can be controlled by herself.

Survived the hardships

"For more than ten years, we have experienced countless hardships for this moment." Bao Zongfeng said.

In December 2016, Northinalson sodium injection was approved in the United States. This is the world's first disease modification treatment drug for the SMA pathogenic gene, which is injected intrathecal and delivered directly into the cerebrospinal fluid around the spinal cord, thereby improving the patient's motor function and changing the course of the disease.

In September 2018, the injection was included in the priority review and approval procedure by the State Drug Administration. In February 2019, the injection was approved in China and then officially launched in Chinese mainland. At that time, the price threshold of 700,000 yuan a needle had turned away countless patients.

As far as treatment is concerned, 6 injections are given in the first year, and 3 injections per year thereafter, which are maintained for life, and once the drug is stopped, the patient's body will continue to deteriorate.

Waiting for the price of the drug to be reduced, in the family of SMA patients, every day is a kind of suffering. "Children are constantly degenerating. We watched As Jenny Bao went from being able to walk, to being able to sit, to being able to lie down, there was no way. Bao Zongfeng often felt regret, frustration and self-blame. What supports them in constantly sending Jeanne Bao to the rescue is a distant belief - to save their lives and survive until the day they can use the medicine.

On December 3, 2021, Northinalsan sodium injection was included in Medicare. In the SMA patient group, everyone's tacit joy turned into tears.

Everything is a gift

"In fact, the first reaction when I first learned that I could take the drug was very calm, and I always felt that it was not real." Jenny Bao recalled.

Jenny Bao was diagnosed with SMA at the age of one year, because the body was as weak as a sponge, and patients with this disease were called "sponge babies". At the age of two, due to a serious lung infection, Jenny Bao was admitted to the intensive care unit for the first time. The illness made her lower limbs completely incapacitated.

Jenny Bao loves school very much. In the sixth year of elementary school, she studied in a wheelchair and achieved the best grades. In April 2013, she was about to graduate from elementary school and was admitted to the intensive care unit twice in a row, losing her upper limbs and unable to hold a pen again.

Physical stillness strengthens freedom of thought. During her illness, Jenny Bao taught herself humanities courses and many foreign languages, operated the computer through fingers and eye controllers, created dozens of lyrics, more than 100 poems, and published a collection of poetry works.

She shared with me a recent little poem, "The Key," in which she wrote, "The mind is like a warehouse, filling the whole world." And I, as the owner of the warehouse, couldn't find any keys to open the door. "She admits that she has not been in a good mood lately." It's an old problem, the pressure from all sides, and the impact of this body on me. But I've always tried to adjust to myself, listening to music, reading books, and chatting with friends. ”

After taking the medicine, her condition eased, and she felt happy, but at the same time there was a faint sadness. The essence of this sadness is still a sense of powerlessness to one's own destiny, "I admit this sadness and do not pretend to be optimistic." But this sadness can also turn into strength. The treatment can stimulate the strength of the muscles, but it still can't restore her to a "normal ordinary person." She has a clear understanding of her physical condition, "I can take off the ventilator and I am very satisfied."

Put yourself to the lowest, so everything you get becomes a gift. "I can feel the kindness of many people who love me, friends, family, strangers." Jeanne Bao said, "I don't think I deserve it, so I've always been grateful." ”

Paper butterflies also fly against the wind

Jenny Bao said that she hopes that in the future, we can promote the improvement of the lack of education for disabled groups. In her view, at present, the barrier-free facilities nationwide are still not perfect, there are not many normal schools willing to accept the enrollment of disabled groups, and the educational resources of adolescents with disabilities are relatively scarce, and it is even more difficult to involve employment.

But she believes in the power of education. She believes that when it comes to mental work, people with disabilities may not have the opportunity to rely on themselves if they receive a good education.

In the world of mind and heart, she is no different from any intelligent and agile girl. For several years, she connected to the larger world through her phone and computer. She read many books, taught herself Japanese, French and English, and was able to read original books. She also became good friends with some patients and online classmates.

Talking about the happiness and misfortune she experienced, she said, "I didn't feel unlucky, I just experienced the inconvenience of life earlier and more." Because I am inconvenient, everyone is willing to do it for my convenience, and this kindness is the blessing I have received. ”

Jenny Bao's screen name is "Paper Butterfly". She had seen a tutorial on origami butterflies and thought it was beautiful.

On the Internet, scoliosis people are affectionately called "butterfly babes" by people.

The wind can blow away a piece of paper, but it can't blow away a flying butterfly.

Butterflies made of paper, flapping their wings, flying against the wind. (Zheng Mengyu)

Source: Xinhua Daily Telegraph