Rare Disease Teen Begins Middle School in Shanghai

A Shanghai boy with a rare neuromuscular disease, once not expected to live beyond the age of 3, began middle school on September 1, The Paper reported yesterday.

Zou Weiluo was diagnosed with spinal muscular atrophy, or SMA, when he was 7 months old. Only the area in front of his elbows and his fingers can move, but with support from his family, schools and the wider community, he completed five years of primary school with strong academic results and an upbeat personality.

To welcome Zou, the Huangpu Experimental Middle School Affiliated to Shanghai Jiao Tong University carried out several accessibility upgrades during the summer. His class was assigned the school's largest classroom, converted from a dance room, and the room was fitted with a rest area and a small sofa so he can lie down after sitting for long periods.

The school also repeatedly adjusted ramp gradients to make movement around campus genuinely barrier-free. Two teachers, English teacher Zhang Xinyan and science teacher Zhu Di, will jointly serve as his homeroom teachers, supporting both his studies and his growth during adolescence.

On the first day of school, Zou drove his electric wheelchair into the Grade 6 Class 9 classroom to warm applause from his new classmates. They also gave him a heart-shaped gift signed by the whole class.

Wu Rongjin, his primary school principal, and former teachers came to see him off, while a robot also joined the welcoming group at the school.

Zou said he was looking forward to new subjects in middle school, including French and geography. He said French sounded pleasant and that he was curious about geography, a subject he had not studied in primary school.

His treatment for SMA saw a major change at the end of 2021, when nusinersen sodium injection was added to China's national medical insurance program. The price of each injection fell from 700,000 yuan (US$104,000) when it first entered the market to 33,000 yuan. Zou became the first patient at Shanghai Children's Medical Center to receive the treatment.