Tuesday is World ALS Day. Two years ago, the Ice Bucket Challenge drew global attention to this rare disease. But has anything changed since then?

For ALS patients, life is tough. Wen Liuquan and her 16-year-old son Ah Jie live together in a 10 square-meter room. She discovered the early symptoms of ALS 14 months ago.

“Now it hurts a lot if I put my right arm behind me. I can’t use my right arm to get dressed. It's very difficult. My fingers can barely move,” Wen said.

Wen’s husband died of leukemia when Ah Jie was five years old. Ah Jie dropped out of middle school a year ago to take care of his mother.

“He’s very tired and sometimes complains. But he won’t say so. Sometimes when he looks in my eyes, I don’t dare say anything, and he doesn’t say a word either. But I’m very clear there’s no cure for ALS, so I try to avoid his eyes whenever possible,” Wen said.

Besides cooking and housekeeping, Ah Jie works part-time to support the family, earning 3,000 yuan per month. That is not enough to cover Wen’s medical bills that cost thousands of yuan each month.

Wen says her biggest hope is that Ah Jie will continue his studies. But Ah says he does not want to go to school anymore. He admits he is a little envious of his normal peers, but he says he can deal with this.

“I’m not very tired. I’m already used to it. I was a bit scared when I first heard about her illness. So I looked it up online and didn’t know what to do. But now I don’t want to think about it too much,” Ah Jie said.

China now has more than 80,000 ALS patients like Wen. It is a big number, but it is also relatively small compared with the total population of more than 1.3 billion. The national healthcare system still does not insure against this rare disease.

Yao Xiaoli is one of the leading doctors treating ALS in China. She says right now no one knows what causes ALS or how to cure it.

“From my observation, the average age of diagnosed patients in China are becoming younger. Currently there is no effective cure for ALS. The average time left for a patient diagnosed with ALS is three to five years. The illness is currently not covered by healthcare insurance, so patients have to pay the expensive bills on their own,” Yao said.

Kuang Guojun, another ALS patient, suffers from a tongue dysfunction. He can hardly talk. He did an interview in writing.

“I was born in 1981. I’m 35. The symptoms began in early 2014, and I was diagnosed with ALS in July that year,” Kuang said.

“Now I’m really desperate. All I can hope is that my daughter can grow up safely.”

Kuang’s eight-year-old daughter is now in primary school. He knows perhaps his life will end sooner than expected, but he hopes his family will receive more help.