Photo taken on May 17, 2009 shows Li Zhuojun, who suffers from amyotrophic lateral sclerosis (ALS), managing an online store at home. (Xinhua)
HANGZHOU, June 26 (Xinhua) -- Li Zhuojun in the city of Linhai, east China's Zhejiang Province, lives a hard life because he suffers from amyotrophic lateral sclerosis (ALS), also known as motor neuron disease.
Even spitting could kill him as the disease is "freezing" his body. Affecting the nerve cells in his brain and spinal cord, the ALS will make him eventually lose the ability to walk, speak, swallow and breathe due to decreased muscles.
Li's heart, however, is being warmed by his family, friends suffering from the same disease and his peers in a volunteer organization for a local charity.
FAMILIES
Qian Chunfang will come to his son in a second when hearing a bell ring. She takes care of his son Li day and night as Li has been bedridden since 2016.
"There is a red button near my left hand," said Li, 36. "Pressing the button, my mother will come to me immediately."
Trying to cure his son, Qian, 63, has taken him to hospitals in Hangzhou, Shanghai and other Chinese cities since he was diagnosed with the ALS years ago.
"Although my mother seemed so strong all the time, I knew that she always cried behind my back," Li said. "I wish I could make my parents a dinner if I had three healthy days. It is the warmth from my family that supports me in the endeavor of fighting the disease."
"COMRADES IN ARMS"
The internet is like wings for Li, with which he can meet friends and even make a living. He started to study webpage making and Flash software on his own since 2001 and opened an online shop selling clothing and suitcases in 2006.
Li called his friends suffering from the same disease on the internet "comrades in arms" because they are all fighting in a "war" against the ALS.
He opened a blog named "Sunshine Valley" with his "comrades," where they can communicate with and inspire each other. "The encouragement and support of my comrades make me keep fighting," he said.
The updates of the blog are gradually decreasing as more and more "comrades" have passed away. "We had a deal that the last one alive would record what we have written on the blog," he said. "I have recorded 160,000 words, and I wish to publish them in the future."
VOLUNTEERS
Although suffering from the disease with no cure, Li still works in a voluntary organization for a local charity. "I believe that helping others is helping myself," he said.
"Li was one of the first volunteers in the organization, which was founded in 2005," said Jin Zhihua, deputy head of Linhai municipal charity federation. "He never missed the activities of the organization, even while in a wheelchair."
The voluntary work that Li can engage in is decreasing as his disease worsens, but more and more volunteers have joined the organization with Li as their inspiration.
"Now there are about 6,000 volunteers in the organization, many of whom are inspired by his story," Jin said.
"I have also been helped by the volunteers and the officials in my community," said Li. "Warmed by all of the people surrounding me, I will strive for survival no matter how tough life will be."
The Chinese Medical Doctors Association (CMDA) launched a project in cooperation with more than 70 hospitals across the country since 2005, which has helped more than 4,000 ALS patients save over 60 million yuan (about 8.72 million U.S. dollars) in medical costs.
