Jiang Mengyuan

I learned about Xin Cai’s story through her grandma. This tiny, isolated girl does not even know that she has been in this world for seven years.

Cai’s disease is called Ohtahara Syndrome (OS), also known as early infantile epileptic encephalopathy (EIEE), characterized by uncontrollable seizure and developmental delays. The disease is caused by abnormal brain activity that comes from a genetic disorder. The method used to diagnose the disease is electroencephalogram findings, also called EEG. An electroencephalogram looks like the yarns used to knit; a normal person’s EEG would show a clear pattern with strict order, represented by organized wavy lines. By contrast, the lines on an EEG of an OS patient resemble the most tangled yarn ball that no one could use for any piece of clothing.

Cai’s family realized something was wrong not long after her birth. However, with only a few cases as reference and some common symptoms with cerebral palsy, she was misdiagnosed. It was a year after her first diagnosis that her doctor determined that she was afflicted with the incurable and frightening OS. The simple fact that the disease has no effective treatment was a thunderbolt to her family. That such a beautiful girl may never have the chance to know the world she lives in, to learn about her family, is a realization that put Cai’s parents into endless emotional torture.

Her mother decided to leave home for years to live in a temple, believing that her devoted faith in Buddha might ease her daughter’s suffering. When science fails to cure the body, faith might be the only thing left to help.

The grandmother did not give up on Cai and tried everything. I visited the girl in their home, where the old lady was helping her with recovery exercises.

I was shocked at her condition. Unable to talk, move or think, she could barely respond to her surroundings. The child had been treated as a cerebral palsy patient at government-funded institutions before her correct diagnosis. Once properly diagnosed, her family took her treatment into their own hands. With no medicine available, the family started to try traditional Chinese medicine on her. Sometimes they spent hours trying to buy a herb.

The economic challenge was immense. The family had to share a rented apartment with two other people to save money. The father was the only one to support this family financially; the mother had returned to care for Cai, and the grandmother was too old to find a job. They lived on the third floor of an old building without an elevator, very inconvenient for the wheelchair-bound girl. Instead of complaining about fate, the grandmother, however, told me how kind their neighbors were.

Cai’s teeth had decayed and she could barely close her mouth with her weak muscles. Her limbs were atrophied even though her mother massaged her multiple times a day. She ate very little.

Cai was the worst case I have interviewed. What made it particularly poignant was that had she been truly suffering from cerebral palsy, she would have been covered by a government program. Her diagnosis with an uncommon disease threw her and her family into an impossible economic hole.

I admire the family’s courage in facing their plight and the love and commitment that bind them together.