Before she could read or write, Lili Rachel Smith understood injustice.
“By the time she was playing on the playground, she saw kids pointing at her and asking, ‘What’s wrong with her, mommy?’ ” said Laura Talmus, Lili’s mother. “That made her very aware of injustices to herself, and it sensitized her to care about other people.”
Lili was born with a rare cranial facial syndrome, known as Apert’s syndrome, characterized by malformations of the skull, hands and feet. She died in her sleep Oct. 10 while at a boarding school in Iowa. She was 15.
In her young life, she had 12 extensive and often painful surgeries. Yet that didn’t stop her from catching Broadway musicals, reading historical biographies, learning to sing opera and advocating for same-sex marriage and the inclusion of special-needs children as a member of the Marin Youth Leadership Commission.
“Her personality entered a space before her body did,” Talmus said. “She really powered her way through life. It was amazing.”
Lili often campaigned with her mother — a veteran Democratic fundraiser and the current Western regional director of American Jewish World Service — and father, Ace Smith, a leading Democratic political consultant who ran Sen. Hillary Clinton’s 2008 presidential campaigns in California, Texas and North Carolina.
Growing up in a politically active household in Kentfield made her activism “a marriage of her internal struggle and external realities,” Talmus said. “She wasn’t treated as a VIP — she worked hard and was a real activist.”
When Lili was 9 and her mother was finance director for Kamala Harris’ bid for state district attorney, mother and daughter spent Saturday mornings handing out leaflets or working at campaign headquarters in San Francisco’s Bayview District.
And in 2008, Lili went on the campaign trail with her father, befriending everyone in her path. He recalled one morning during Clinton’s campaign when he was working with Mike Easley, North Carolina’s then-governor. Lili disappeared with Easley’s wife, Mary. They returned shortly singing Sam Cooke’s ’50s hit, “Wonderful World,” at the top of their lungs.
“Lili was the sort of person who just connected instantly with people,” Ace Smith said.
Lili’s family was active at Congregation Rodef Sholom in San Rafael. Lili borrowed CDs of liturgical music from the rabbis and cantors, which she often listened to in the morning while getting ready for her day. It inspired her, her mother said.
Lili had her bat mitzvah at Rodef Sholom two years ago and delivered a d’var Torah about the Cities of Refuge in ancient Israel. During that speech, she told the congregation that “one of the things I am most passionate about is promoting world peace — my Torah portion is a good guide for starting this process.”
Rabbi Stacy Friedman of Rodef Sholom remembers Lili as being an empathetic and thoughtful teenager who was wise beyond her years.
“Because of the challenges and obstacles she faced, she really fought for the underdog,” Friedman said. “If she ever witnessed injustice — if someone was not being treated in a kind manner — she always stuck up for them, because she knew how that felt. It made her very strong, and made her very brave.”
Lili is survived by her mother, Laura Talmus; her father, Ace Smith; and brother, Abram Smith. A memorial service was held Oct. 16 at Rodef Sholom. Graveside services followed at Mount Tamalpais Cemetery.
The family asks that contributions be made to the Clinton Global Initiative, 1301 Avenue of the Americas, 37th Floor, New York, NY 10019; Breast Cancer Fund, 1388 Sutter St., San Francisco, CA 94109; and the Scattergood Friends School, 1951 Delta Ave., West Branch, IA 52358.