Editor's note: When this boy was four years old, he used to tell his friends that he suffered from an incurable happiness disease. His name is Gengen, and he also has an English name: Ben. Ben is eleven years old now, but just about all he can do is to sit in a wheelchair. He cannot stand because his legs won't bear his weight; he finds it difficult to write because he can barely raise his arms; he cannot dress or feed himself, and he even cannot turn over without assistance. Ben uses voice-recognition software to record his views on the world and his daily life. In fact, he doesn't have an incurable happiness disease; he suffers from an incurable, miserable disease named spinal muscular atrophy, or SMA. SMA is an inherited autosomal recessive disease similar to Amyotrophic Lateral Sclerosis (ALS). One in every 6,000 newborns will suffer from ALS, and 50 percent of children who show symptoms of ALS before they are two years old will die young. Ben was diagnosed with SMA when he was about one year old, and since that day he and his parents have set out on a long journey to fight SMA in America.

After Ben's diagnosis was confirmed, Ben's mother Huang Huihua decided to stay at home to take care of her son. Huang taught herself traditional Chinese medicine massage and acupuncture and bought all kinds of massage equipment to help Ben. At the same time, she also taught Ben all his school courses at home. She has strived to provide for all of her child's needs and to help him live a full life. For instance, she persuaded the local school district to invite her son to join a middle school chorus and to send a van to pick Ben up every day. This experience not only helped Ben learn about music, it also helped him make more friends. Huang Huihua also sends Ben to school, and though Ben cannot spend a long time at school, she still tries every means to help him attend campus activities and give performances. To help Ben experience nature, she planted vegetables in their yard at home. To get Ben to exercise more, she set up a swimming pool behind their house. Thanks to her insistence and great care, Ben's everyday life is rich in happiness.

In spite of his congenital disease, Ben has a clever mind. He likes playing chess and card games, watching the ATP (Association of Tennis Professionals) tennis tournaments, writing and listening to music. What's more, he has a gift for mathematics. He scored in the top 0.5 percentile in the American Invitational Mathematics Examination of high school students. An American named David Brown noticed Ben's gift and invited him to represent America along with other mathematics prodigies in the annual World Mathematics Team Championship (WMTC) in Beijing. This year, Ben placed 13th out of 270 children in the WMTC and won a gold medal.

Ben's story inspires many people with SMA. In China, many children with SMA have a bad quality of life. They have no chance to acquire an education or make friends, and they are often neglected by society. Huang Huihua says, "In China, it is difficult to find something that can be used by people with SMA, and there are fewer schools willing to receive children with SMA. They should gain understanding and inspiration from Ben's story."

 

Huang Huihua, Ben's mother, takes on the task of preparing for the World Mathematics Team Championship (WMTC) in Beijing. She brought five pieces of luggage weighing more than 250 pounds from America. The items she brought include Ben's massager, a manual wheelchair, an electric wheelchair, an oxygen machine … and a sleep mask for rest. [CFP]

Print E-mail

Go to Forum >>0 Comment(s)

Add your comments...

• User Name Required
• Your Comment
• Enter the words you see:    
  Racist, abusive and off-topic comments may be removed by the moderator.