American epileptic child of a Hmong refugee family who became the subject of a social sciences biography, The Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors, and the Collision of Two Cultures (1997) written by Anne Fadiman. The book tells the story of Lia Lee who was diagnosed with a severe form of epilepsy named Lennox-Gastaut Syndrome and the culture conflict that obstructs her treatment.
Lia experienced her first seizure at three months of age, but a resident at Merced Community Medical Center misdiagnosed her condition, and the hospital was unable to communicate with her parents since the hospital had no Hmong interpreters.
Anne Fadiman wrote that Lia’s parents did not give her medication as it was prescribed because they believed that Lia Lee’s state showed a sense of spiritual giftedness, and they did not want to take that away. The American doctors did not understand the Hmong traditional remedies that the Lee family used. The doctors treating Lia Lee, Neil and Peggy Ernst, had her removed from her home when she was almost three years of age, and placed into foster care for one year, causing friction with her parents. By age 4½ Lia Lee had been admitted to hospital care 17 times and had made over 100 outpatient visits.
The worst seizure Lia had put her onto the verge of death. She went to the emergency room and Dr. Neil Ernst could not do anything. He talked to Lia’s parents about transferring her to Fresno, California because Lia would need further treatment that Dr. Ernst could not provide. Lia’s parents believed their daughter was transferred because of the Ernsts’ vacation plans.
Lia Lee slipped into a coma after suffering from a tonic clonic seizure in 1986, when she was four years of age. Lia Lee’s doctors believed she would die, but Lia Lee remained alive but with no higher brain functions.
Lia Lee lived in a persistent vegetative state for 26 years. She died of pneumonia in Sacramento, California on 31 August 2012 at the age of 30. At that age she weighed 47 pounds (21 kg) and was 4 feet 7 inches (1.40 m) tall; many children with severe brain damage have limited growth as they age.
Link to Wikipedia biography