Resilience

Feng said the only unfulfilled dream he has is getting married and having children. "Family is a priority on my list of values. I wish I could have had a spouse and a kid to love and to be loved," he said.

Feng said his father, a college teacher, and his mother, a physician, were not close to each other when he was a child. They divorced when he was 16, one year after his disease began rapidly deteriorating. He has lived with his grandparents ever since.

He said that he had a girlfriend for seven years when he was in his 20s. Love and marriage are common problems for a patient such as him, Feng said, in addition to obtaining an education and job and psychological support.

He said like most SMA patients, he was rejected by both regular and special education schools. Luckily, his family could afford a home tutor.

But the lack of an academic degree makes it harder for Feng, and others like him, to obtain work. Feng said he once tried for a full-time job translating documents, but was turned down because he did not have a degree.

He said online courses, which have been thriving due to the COVID-19 pandemic, could help disadvantaged people receive an education at home. "The inaccessibility of a school education also makes it hard for them to integrate into a community of the same age," he said.

Thanks to the internet, Feng said some patients can work from home part time as online store managers, customer service staff, translators and designers. Earning an income would improve their sense of self-worth, he added.

Feng said better psychological support could help patients and their families manage their emotional responses, such as when an incurable disease is first diagnosed.

His memories of his own childhood are murky. He can't remember if he had ever asked his mother why he was physically different from other children.

But he can clearly recall holding and reading all kinds of books, including science fiction and kung fu novels and detective mysteries.

He also remembers that once he could hold an ice-cream cone and eat it by himself.