SACRAMENTO -- Foua Yang crumpled in tears on the staircase in her south Sacramento home, just feet from the empty hospital bed where her daughter Lia Lee lived most of her life.
"I'm deeply saddened that Lia's no longer of this world, I love her very much," said Yang, clutching a picture of Lia as a lively 4-year-old in traditional Hmong finery, running from her mom.
Lia -- who in July celebrated her 30th birthday in that bed surrounded by her mother, brother, seven sisters and numerous nieces, nephews and cousins -- died Aug. 31 after a lifelong battle against epilepsy, cerebral palsy, pneumonia and sepsis, a toxic reaction to constant infection.
Her family's struggles with hospitals, doctors and social workers were chronicled in Anne Fadiman's best-selling 1997 book, "The Spirit Catches You and You Fall Down," which altered American views of cross-cultural medicine. She became a symbol for disabled children and immigrants intimidated and confused by Western medicine.
At 4-foot-7 and 47 pounds, Lia Lee could speak only with her eyes and cries. Stricken by seizures from infancy, she had fought on, singing Hmong folk songs and joyfully running around her neighborhood. At 4 she suffered a grand mal seizure that stole her speech and her ability to move.
"Even though she's never spoken a word since the grand mal seizure, Lia taught a lot of doctors and nurses to care for people from other cultures more sensitively," said Fadiman. Medical schools use her book, and shamans are allowed to practice in California hospitals.
Doctors had predicted her imminent death after her seizure, and her parents took her to home from the hospital to die. But when her parents removed her feeding tube, Lia cried out. Her sister Mai Lee, 32, said her will to live, nurtured by her family's love, faith and constant care proved the doctors wrong.
"Lia's legacy is to give families with sick children the strength and courage to question their doctors," Mai Lee said. "We didn't ask those questions." Lia's primary doctors, Neil Ernst and Peggy Philp, said the girl and her family profoundly changed medicine.
"Lia's a game changer," Ernst said. "She's altered so many peoples' approaches to dealing with patients with different beliefs."
Lia was born July 19, 1982. The day before Thanksgiving in 1986, she suffered her near-fatal seizure at the kitchen table. Her father declared, "when the spirit catches you, you fall down," meaning a powerful spirit was locked inside her body, Mai Lee said. Lia was rushed to the Merced County hospital for the 16th time.
She was rushed to a hospital in Fresno, where doctors declared her brain-dead. The family looked for a funeral home.
But when they removed the tubes, her cries convinced them that Lia was not ready to die. Her parents, like most traditional Hmong believe in ancestor spirits. They asked a shaman to travel to the highest level in the spirit world and strike a bargain: "Give us our daughter's life and we'll give you a life in exchange." They sacrificed a pig and got their wish, said their oldest daughter, Zoua Lee, 48.