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 America's views on cross-cultural treatment. She became a symbol for all 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 her cries. Stricken by seizures since she was a few months old, she battled through, 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 and universities now 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 home from the hospital to die. But when her parents removed her feeding tube, Lia cried out. Her sister Mai Lee, 32, said her strong 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 people's approaches to dealing with patients with different beliefs."
Philp added, "We saw her life ending when she was 5, but her mother's unconditional love taught me the value of life."
The book details the family's odyssey. Lia's parents, Yang and Nao Kao Lee, fled their mountain village after Laos fell to the communists in 1975. After years in Thai refugee camps, they were resettled in Merced in 1980, and moved to Sacramento in 1996.
Lia was born July 19, 1982. The day before Thanksgiving in 1986, she suffered her near-fatal seizure at the family's 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.
Her seizure lasted two hours. Her temperature rose to 104.9, her blood pressure plunged, her flailing fingers and hands turned blue. She was rushed to a hospital in Fresno, where doctors declared her brain-dead.
The family looked for a funeral home, and prepared Lia's funeral clothes for her journey through the spirit world.
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.
But because of language and cultural differences, her family had trouble administering her medicine, and she spent a year in foster care. There are no villains here, Fadiman said - both Lia's family and her doctors had the best intentions.
Lia's sister True Lee, 35, helped her mom care for her for 20 years. "Lia's made a huge impact on medical history, and on our family," True said. "She's kept us together."
Lia was the center of every family ceremony, every birthday, smiling with her eyes and even giggling occasionally. Every day Lia's mom and sisters would talk to her, feed her, hold her and caress her.
Her bed sits under a photo of her father, who died in 2003. To the left is a huge wall calendar, each day a record of her family's devotion: medications, meals, drinks, bowel movements, tooth brushing, showers.
True fed Lia intravenously and gave her orange or cranberry juice. She hated apple. "She had all her senses, except speech, and she spoke with her eyes," True said.
The last entry: Breakfast – three syringes of formula – and Tylenol for pain.
"I never could go out to eat with my husband, because one of us always had to be here," Lia's mom said. "I feel sorry she never got to eat a good meal, like McDonald's."
Yang prays that other families will learn from Lia's journey so they don't make the same mistakes or go through the same struggles. Mai Lee said that while both sides may share the blame, "in our culture, we believe in destiny – it was meant to be."
Her family believes Lia will be reunited with her father.
"It's extraordinary she survived so long in a vegetative state," Fadiman said. "It's a testimony to the exceptional loving care her family gave her."