When Sophia Herzog Sachs died at her Palo Alto home on Monday, July 25, she was surrounded by family and friends, just as she had for her entire life.
She was only 4.
But Sophia’s parents say their daughter had a profound impact on everyone she came in contact with.
Born with Niemann-Pick Type A, a rare but fatal genetic disease that affects mostly Ashkenazi Jews, she barely stood a chance. But together with her parents, Karen Herzog and Richard Sachs, Sophia kept fighting.
However, her health worsened in recent months. “I was hopeful,” said Herzog, “but I recognized that she was declining.”
No other child with Niemann-Pick Type A ever lived as long. Most die before their third birthday. Sophia turned 4 in May due in large part to the extraordinary efforts her parents made to support her well-being.
From the time their daughter was diagnosed in 2003, Herzog and Sachs decided to launch a communitywide effort to save Sophia’s life or, at least give it meaning and joy.
Sophia’s Garden Foundation brought together elements from the Stanford University medical community, the Jewish community and the South Bay at large. “We saw her illness as a call for compassion, creativity, community, collaboration and hope,” said Herzog. “Those were the guiding values in Sophia’s care and in the Sophia’s Garden Foundation.”
A string of visitors — friends and strangers — brought meals, prayers and gifts to the Herzog-Sachs home. They would care for and coo over Sophia, or offer her parents a much-needed break. By the end, a core volunteer staff of medical professionals, therapists and healers rotated shifts.
The child was never alone.
“Her life was not about finding a cure,” said Herzog, “but about healing and community.”
Sophia was born May 22, 2001, and appeared healthy at first. But by six months, she was unable to eat solid foods or crawl.
After extensive testing, doctors diagnosed Niemann-Pick Type A, a lysosomal storage disorder that causes cells to produce an insufficient amount of an enzyme necessary for proper metabolism. This meant Sophia’s cells were literally choked with waste.
Though Sophia grew more ill over time, doctors marveled at her stamina. Herzog and Sachs welcomed and employed alternative healing methods beyond Western medicine, and brought into their home various spiritual traditions in addition to their own Jewish faith.
Herzog and Sachs also started the Sophia’s Garden Foundation as a way to draw together these disparate faith and healing traditions. Herzog and Sachs strove to make their home a sanctuary of peace, and neighbors grew accustomed to seeing streams of volunteers show up, or to say hello to Sachs as he pushed Sophia in her stroller around the shady streets of Palo Alto.
Said Sachs: “We were enormously blessed for having had her, and everyone around us expressed the same thing, for having her included in their lives.
“We had a whole life with her in a very short time. We didn’t miss anything; it just happened really fast.”
Medical science is not close to a cure for Niemann-Pick Type A, though there is growing hope for enzyme-replacement therapy and core blood-transfusion therapy.
Though she never spoke and couldn’t swallow, and never walked or crawled, Sophia had a profound impact on the lives of the South Bay community that cared for her.
At a memorial service held Saturday, July 30, at Palo Alto’s Green Meadow Park, more than 150 people came to say goodbye. Said Herzog, “We expressed our wishes for the community to stay alive and to be there for each other the way we were there for Sophia.”
Then the mourners released several Monarch butterflies. Normally, says Sachs, the butterflies would fly away. But on that day, at that hour, they lighted on a wishing well close by. And there they stayed.
Sophia Herzog Sachs is survived by her parents, Karen Herzog and Richard Sachs of Palo Alto, and her sister, Lauren Sachs. The family requests donations be made to Sophia’s Garden Foundation, www.sophiasgarden.org.