Meet the Chinese parents willing to risk drug trafficking charges to give children rare epilepsy medicine
- When vital treatments are not legally available, many Chinese people are driven to look abroad for supplies despite the legal dangers
- A 2018 film highlighted the plight of cancer patients, but parents of children suffering rare forms of epilepsy still have to resort to illicit means
Whenever Yang Li turns on her phone she is flooded with pleas for help from parents desperate to secure vital epilepsy medicine for their children.
The 42-year-old from Fujian province in southeast China and other members of her WeChat groups are at constant risk of falling foul of the law because they are “trafficking” drugs from abroad that are not legally available in the country.
Yang’s daughter started suffering from fits and seizures in 2017 when she was just five months old. The girl was eventually diagnosed with West syndrome, a rare form of epilepsy that causes infantile spasms that can last for minutes at a time.
Yang, not her real name, quit her job to take care of her daughter full-time, visiting hospitals across the country to find treatment.
But there is no standard treatment for such rare disorders and parents have to try different combinations of medication – which means she has tried at least 10 different types of medicine over the years to see if it helps improve her daughter’s condition.
In October 2017, eight months after the initial diagnosis, a doctor recommended clobazam, but warned her the hospital had no way of providing the medication and told her to rely on her own initiative.