Jiang Mengyuan

MING, the elder brother, was 16 when I visited him. His sister Tingting, 8, suffered similar symptoms.

Their mother Shen Qin and their father first suspected something was wrong when Ming was around 1. Ming was particularly slow to learn to walk. His efforts appeared to be hindered by a lack of balance, and as he grew, he faced other muscular problems. He struggled to control his body. Ming also had problems with his eyes, including severe farsightedness and astigmatism. Fortunately, the eye issues improved over the years, but with reading glasses, the best vision he can get is 1.0. The doctor determined Ming’s condition was caused by a certain brain damage, but could not reach an accurate diagnosis.

Qin tried genetic testing to help them define the underlying disease, but to no avail. The only possible cause that Qin and her family knew was the high level of transaminase, which is often associated with liver damage. Testing for high levels of transaminase sometimes is used to diagnose DMD, but Ming’s disease is more complicated. Born in Shenzhen, Ming had government support to receive physical therapy in designated institutions, like most other patients I interviewed for this story collection. But Ming did not particularly benefit from the recovery exercise regimen. So he stopped the government-funded physical therapy.

Although his ideas unfolded in slow motion, Ming was able to express his thoughts clearly. He accepted the fact that he could not move as flexibly as his peers. A quiet boy, he did not dwell on what he could not do, but focused on the things he could accomplish. Ming was very much into music and played an instrument. Given his physical handicap, it would be much more difficult for him to move his fingers when trying to play.

Ming started school at a relatively older age than his peers. Qin had accompanied him to school since Ming was in kindergarten. Things became harder when Tingting started her primary school. Unlike her brother, she was born in Hong Kong, which made things more difficult. It used to take Qin two hours per day just to drive her daughter back and forth to school in Hong Kong. At the same time, Qin also had to be back in time to prepare dinner. This exhausting routine eventually became too much for the family and so they transferred Tingting to a school on the Chinese mainland. Tingting had taken vitamins for half a year while being treated in Hong Kong, but stopped afterward. As the second child of the family, she showed symptoms much earlier than Ming. Nevertheless, Tingting’s similar symptoms shed no light on their cases, although the same high level of transaminase suggested they suffered the same disease.

For Ming’s family, economic burdens were not the real problem. The challenge was a lack of diagnosis. Neither Ming nor Tingting was taking any type of medicine now that Tingting’s symptoms didn’t respond to vitamin treatment.

Besides taking her children to school, staying with them until after school, and preparing for family meals, Qin also had to wait while Ming was taking his daily two-hour swimming lesson — the only physical therapy that Ming was doing. Qin was so busy that she seemed to have no personal time. What made things worse were the arguments she occasionally had with her husband over their limited options for helping the children.

What Qin and her family faced was complete uncertainty, and the accompanying fear. Nevertheless, this uncertainty had become a motivation for Qin: A possible diagnosis might offer answers that could help her children.