The Gift of Time

By Caroline Preston

Photograph by Michael Ventura, for The Chronicle

In the months before her son Andre’s death from a brain tumor, Valerie Sobel spent 20 hours a day by his bedside trying to comfort him. But few of the other parents of ailing children Ms. Sobel met could afford to do the same, burdened as they were by work and financial pressures.

In 2000, five years after her son died, Ms. Sobel created the Andre Sobel River of Life Foundation to give parents, particularly those who are single, the chance to spend more time with their dying children. Her organization has given $2.5-million to date to 12 hospitals that then distribute the money to patients’ families. Parents use the money to pay for medications not covered by insurance and plane tickets to visit their hospitalized children, and even to save their homes from foreclosure.

“We are caring for the caregiver,” says Ms. Sobel. “That’s our way of caring for the child. We want to enable that parent not to have to lose their minds in having to go to work and leave a dying child alone.”

Sarah Friedbert, director of the Haslinger Family Pediatric Palliative Care Center, at Akron Children’s Hospital, in Ohio, says a $100,000 pledge from the Sobel Foundation, to be paid over four years, is helping the hospital build long-term financial support for efforts to aid single parents. Under a requirement of the grant, the hospital has matched the first year of the gift and is working to build a $1-million endowment to support the kind of work that Ms. Sobel’s foundation does.

In addition to its grant making, the foundation is helping to build awareness about the toll exacted on single parents by their children’s illnesses. According to preliminary research by the National Institutes of Health, 78 percent of parents of a terminally ill child divorce or separate within a year of the child’s diagnosis. (Ms. Sobel’s husband took his own life a year after their son’s death.)

Currently, the foundation is working with the California Legislature to make food stamps more accessible to poor families who are busy caring for sick children.

Here, Cynthia Little Stanley reads to her daughter Katheryne, who is suffering from a brain tumor, at the Children’s Inn at the National Institutes of Health. A $1,071 grant from the Sobel Foundation paid for a return trip home to Louisiana for Ms. Stanley and Katheryne’s stepfather after one of their visits to the Maryland medical center.