WuXi AppTec Content Team Editor
“I hope I can get through all the hardships in life, digest them and make me stronger.”
——Li Kaiyi, a patient with spinal muscular atrophy
“What a speechless event / but a manifestation of growth / will only improve my limit / leave a memory of memory… Although there are always some things around me that make me helpless, as long as I firmly believe that the road will not The distant flowers bloom naturally…”
In front of the camera, a confident and slightly shy boy beat the beat in front of the camera and sang his original “Speechless Incident” with “Trump rap”, with a wall behind him. The certificate of merit is particularly striking.
▲Click to watch Kai Yi’s singing video (video source: provided by the patient’s family)
You may not think that this self-composed, self-sung, mature and positive boy is just a third-year student;
You may not have imagined that he has been in a wheelchair for nearly two years now.
His name is Li Kaiyi, a boy from the Yi nationality from Sichuan, currently studying at Shimian Qiyi Middle School in Ya’an City, and also suffering from Spinal Muscular Atrophy (SMA)Patients.
▲Kaiyi at school (Image source: Meier SMA Care Center)
SMA is a rare, autosomal recessive disorder that occurs about 1 in 6,000 to 10,000 people. Patients experience muscle weakness and muscle atrophy due to degeneration and loss of motor neurons in the anterior horn of the spinal cord.
Today, let’s approach Li Kaiyi, a teenager with SMA, and listen to his story.
“It wasn’t until after the diagnosis that we found out that the son was to blame”
Kai Yi’s mother said that when her son was a child, he was a bit shy when he was walking, and he often acted like a spoiled child and asked his grandmother to carry it. Have classmates for dinner every week.
At the time, parents had criticized him for “don’t bully his classmates.”
It wasn’t until after the diagnosis in January 2018 that I realized that he was at fault-It was SMA that made his feet weak and his hands unsteady…
Many children with rare diseases have a tortuous medical experience, and Kaiyi is no exception.
Once doctors thought he had “a fatal disease with no cure,” but his family was reluctant to believe it.
Finally, his mother took him to the experts from West China Hospital of Sichuan University, and he was diagnosed with SMA. The mother called home excitedly: “Kaiyi is not the disease (as said before)! My son’s life is saved!”
Dad’s reaction was very calm: “I know that Kaiyi will not be so bad luck, my son and I are destined.”
It should be noted that there are 4 types of SMA. Among them, type I and type II have earlier onset, with onset within 6 months and 6 to 18 months respectively. If no treatment and support such as breathing, nutrition, and rehabilitation are given, type I patients often live less than 2 years old, while type II patients tend to live less than 2 years old. Type patients suffer from muscle atrophy and weakness, severely limited motor function, and need family care in daily life.
Type III and Type IV have a later onset, with onset over 18 months and in adulthood (usually 20 to 30 years old), respectively. Kaiyi is diagnosed with SMA III. Although it does not affect life expectancy, if there is no treatment and intervention, over time, the disease progresses and the motor function will continue to decline.
While there is no complete cure for SMA, a variety of new drugs and multidisciplinary therapies are available to help improve symptoms and survival. For example, Nosinagen Sodium Injection, which has been marketed in many countries including China, is suitable for patients of all ages with type I, II, and III SMA.
Kai Yi is very considerate of her mother’s hard work. Even if she has limited mobility, she will take the initiative to help take care of her two twin sisters at home and do housework within her capacity.
▲A happy family of five in Kaiyi (Photo source: Meier SMA Care Center)
“He would love to sit in this classroom”
At school, Kai Yi was also aggressive and ranked among the best. He ran for class president, established a music club, organized his students to win the first prize of the school’s cultural performance, and won the 2021 Year Ya’an City “New Era Good Boys” honorable title.
Mr. Su, the head teacher, said that in the first year of the first year of the first year, Kai Yi could walk alone. It took a full 30 minutes to climb the fourth floor, but she was not embarrassed, which shocked her, ” I think he really wants to sit in this classroom.”
However, as his condition progressed, he could no longer go upstairs alone, and his family hired security guards to carry him upstairs temporarily. When the principal and teacher learned about this, they also actively tried to move the classroom where Kai Yi was located to the first floor.
▲A group photo of Kai Yi (second from left in the front row) with the class teacher (first from left in the front row) and students (Photo source: Meier SMA Care center)
Writing original songs from a wheelchair, music brings him to meet more people
Kai Yi also loves to sing. The indissoluble bond with music stems from the guitar he started playing in elementary school. Although he fell ill after one year of study, it was this love that became another beam of light in his life.
In 2020, he began to try to compose and sing, and his first audience was his mother. In the Meier International Caring Day event in 2021, his online debut “The Big Silent Event” attracted many fans to watch.
In the rare disease group, there are many friends like him, because music has found an ally and used singing to arouse more people’s attention to rare diseases.
This year, on International Rare Disease Day, they will usher in another glorious stage.
At 10 a.m. on February 28, WuXi AppTec will join hands with the Beijing Pain Challenge Public Welfare Foundation to hold an online eventwith the theme of “Blooming the Color of Life” Themed 2022 Rare Disease Day Charity Concert, more than 40 rare disease advocacy organizations and volunteer groups will participate. In addition to the wonderful performances from rare disease patients and volunteer groups, this concert will also have a team of music recommendation officers composed of well-known musicians, heads of patient advocacy organizations, and representatives of art groups to interpret the background of each piece for us. deep meaning.