When we saw the child again, it was clear that Xue-yan has inherited her mother's disability. Her facial structure is typical for a child with Down Syndrome, a flat nose and eyes that are far apart. Her grandmother reported that she is turning four soon. However, Xue-yan still has not learned to talk. She makes a variety of sounds but cannot utter words. The father, illiterate because he never went to school, told us that the entire family lives with the grandparents on the mother's side (very culturally unconventional and a source of shame for the man in the household). He works on and off at part-time jobs around town. He tries to pay around $5,000 rmb a year to his mother-in-law to supplement living but struggles. His brother-in-law is disgruntled by the situation, causing much conflict in the family.
Even compared with the average LRS family, which deals with great adversity brought on by poverty and oppression, this family is especially unfortunate. Not only are there a number of biological and socioeconomic factors that trap them in a bad cycle, their lack of education and awareness makes them the most vulnerable to unexpected exigencies in life. They had been paying a rural health insurance issued by the government for several years, costing only $50 rmb a person. However, having gone through a particularly financially difficult year, the father decided to stop paying for the insurance and threw away their membership. Had he not done that, they would have been able to receive thousands of dollars in stipends for Xue-yan's surgery. A lack of education and resources make it extremely difficult for the family to apply to any other type of aid that requires paperwork, reading, printing, and so on.
This is compounded by a series of institutional barriers that prevent the poorest people from actually receiving help meant for them. The father confessed that in his village, the rich people (those with education and some money) are the ones who get all the aid, while the poorest of the poor have no access at all. I'm very happy that LRS can help families like this one overcome some of their difficulties. I hope other programs in China, both governmental and non-governmental, can imitate the way LRS reaches out and take into consideration the limitations people like Xue-yan's father have in trying to reap the benefits of policies meant for them.