Jiang Mengyuan

AT about 3, Yaoyao was diagnosed with Duchenne Muscular Dystrophy, also known as DMD, a genetic disease that usually affects males; DMD affects muscular development and can cause damage to brain function. Mothers often are the carriers in the cases of DMD, and for Fei Li, the possibility of having a son with DMD was 50 percent. Yaoyao began to show symptoms at 1. He was undergoing a myocardial zymogram exam to assess his pneumonia at the time, and the result showed that he had a matrix metalloproteinases (MMPs) result that was 10 times higher than normal. As doctors did not recognize the significance of this result, Yaoyao was not diagnosed. However, another physical exam that Yaoyao took for his kindergarten registration demonstrated that, besides the high MMP level, his transaminase was also higher than usual, pointing to liver damage. The combined abnormal results led to the diagnosis of DMD. The frightening part about this disease was that the family knew the condition would get worse, with no cure.

Yaoyao began taking hormone treatment, commonly recommended for general muscular problems, and engaging in physical recovery exercise. Hormone therapy helped stall muscle deterioration, but in the long term not very effective for DMD. Luckily, hormone therapy, not covered by government medical insurance, is affordable.

In the city where Li’s family used to live, the physical recovery exercise is covered by the government if the patient is treated in designated institutions. In other cities, most patients with disabilities can only exercise at home, without support from the government. Since Yaoyao was still a primary school student, he also received additional subsidies. Nevertheless, the available medical interventions could only temporarily ease Yaoyao’s pain and his family’s worry. Li always had the fear of losing Yaoyao eventually. She also feared that Yaoyao would be discriminated because of his appearance and limitations.

The only student with disabilities at his school, Yaoyao had to take classes on the third and fourth floor every day. He had already lost part of control in his lower limbs, which means he had to be carried up and down stairs by others. He was not yet wheelchair bound, but the family knew this would eventually be the case. When that time came, it would be even harder for Yaoyao to go out since not all buses and subways have an adequate system to transport the disabled.

Fortunately, Yaoyao was not alone in his fight against DMD. He had a sister about eight years younger, called Xinxin, to keep him company. Despite their age difference, they got along pretty well. Xinxin picked up things for her brother and learned to defend and protect her brother. Yaoyao was happy when hanging out with her and reading poetry.

Although Li had been pleased to see the intimacy between the brother and sister, she was wary that Xinxin may have negative feelings about her brother’s sickness as Xinxin grew up. As Yaoyao’s condition got worse, Xinxin might eventually have to take some responsibility for caring for her brother, which Li feared would be a burden for Xinxin.

Their story echoes that of my brother, whose journey with DMD has ended. Yaoyao’s journey continues, and I hope his has a better ending.