ALS patient encourages students in book donation
- By Chen Boyuan
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E-mail China.org.cn, May 31, 2016
An ALS (Amyotrophic lateral sclerosis) patient donated his new book "Unstoppable: Writing Life With Eyes" to Inner Mongolian primary and middle school students on May 30, in Beijing, ahead of International Children's Day, which falls on June 1 and International ALS Day on June 21.
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Wang Jia poses for photos with people empathetic to his condition in Beijing on May 30, 2016. [Photo by Chen Boyuan / China.org.cn] |
It is the second book by Wang Jia, a 33-year-old patient, written with only his subtle eye movements indicating word choice; his first book "There Is No If in Life" was published in 2012. The book donation means to encourage students to persevere despite life’s many difficulties.
ALS is a specific disorder that involves the death of neurons. It is characterized by stiff muscles, muscle shrinkage and gradually worsening weakness. ALS is one of the three currently incurable diseases in the world, apart from cancer and HIV/AIDS.
Patients of ALS usually have difficulty speaking, swallowing, and eventually breathing. In China, ALS is also referred to as "gradual freezing man syndrome." The recent world popular ice bucket challenge reflects the world's growing awareness of the sufferers of this disease.
Contrary to the craze of the ice bucket challenge, the sufferings of ALS patients, along with their families, friends and people who take care of them, are seldom made public. The book donation may in part spread the message that the necessary attention given to ALS patients is so much more than soaking oneself with icy water.
The China Soong Ching Ling Foundation (CSCLF) is the society that brought Wang together with the needy students in Taipusiqi County of the Xilingol League in Inner Mongolia. The CSCLF set up a special ALS fund named after Wang Jia in November 2012 and henceforth increased financial support for those who suffered the same disease and pain.
Tang Jiuhong, director of the Department of Funds at CSCLF, acknowledged Wang's exceptional perseverance as he carries on in life. "Wang is interpreting in his own way the unique value and honor of one's life, and such a spirit is capable of inspiring everyone," she said.
In handing over the books to students together with CSCLF vice chairman Jing Dunquan, Tang said the book's title "Unstoppable" is a good choice, and is suitable for motivating students.
The number of ALS patients in China is estimated at 200,000, but the actual number is feared to be much higher.
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