Han’s mother, Kang Changxia, takes her to school by bike every morning, then rushes to her cleaning job. Han Qi, Han’s father, is a chef, and they both work as much as they can to be able to afford the cost of their daughter’s medication.
She was diagnosed with the disease when she was 3. Patients with Gaucher disease lack an enzyme needed to break down a certain fatty chemical in the blood, causing build-up of fatty substances in organs, particularly the spleen and liver. This causes them to enlarge, and affects their function. Other complications include blood problems and bone issues. Han Shuo has anemia, and she has a lot of pain in her legs, making it difficult to walk, so she uses walking sticks.
After class end – she is only excused sports – her friends help her get home, as her parents are still at work.
“One injection of Imiglucerase to treat Gaucher disease costs more than 23,000 yuan ($3,434). We have to pay 6,900 yuan,” Han Qi told the Global Times.
In June 2017, Tianjin established an insurance system that included rare diseases, and now the family can claim back 70 percent of Han Shuo’s medical costs. But when she was first diagnosed, the high cost of the medication meant it was out of reach for the family. Eventually, her spleen ballooned to three kilograms, and when she was 9, it was removed.
Even so, since the family’s monthly income is just 8,000 yuan a month, Han Shuo only receives one injection of the life-saving drug. She needs at least five injections every month, according to her height and weight. The underdose aggravates her illness, and the week before, she could not attend school, because her legs hurt so much.