Spinal Muscular Atrophy (SMA) is a rare genetic disorder that affects 1 out of 20,000 newborns. But once the disease takes hold, the result is a lifelong burden of ill health. In China, effective medicine combating the illness costs nearly $100,000 per dose, and at least three shots are needed per year - beyond the means of almost all Chinese families. But at the end of 2021, a medical insurance negotiation highlighted the dilemmas faced by many sufferers and their families. Here are the stories of two SMA kids, Tiezhu and Ranran.
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