These were the difficult questions Arnold and Frimet Roth, the parents of Malki Roth, faced when the vivacious teenager was killed in the August 2001 attack on Sbarro pizzeria in downtown Jerusalem.
The Roths, who have six surviving children, ultimately decided to establish the Malki Foundation at Yad Sarah, an Israeli organization that, among other things, lends out medical equipment — free of charge — to whomever needs it.
Inaugurated in January, the Malki Foundation was created to enable families of very ill or disabled children to care for them at home. Although Yad Sarah annually lends out thousands of wheelchairs, blood-pressure cuffs and numerous other medical items, very few are designed for use by children.
The Malki unit, which consists of a cheery room at the back of Yad Sarah's main lending warehouse in Jerusalem, is filled with dozens of child-size wheelchairs and walkers, hoists to easily transfer children from a wheelchair to the bed or bath, and a child-friendly hospital bed fitted with sunny yellow safety bars, print sheets and a big Winnie-the-Pooh stuffed bear. Mickey Mouse and several of the 101 Dalmatians brighten up the walls.
Every piece of equipment is new and available for long-term loan, saving already financially burdened parents thousands of dollars. Startup funds have come from donations by individuals and businesses, among them the Australian Pratt Foundation and the Jerusalem-based company Insyst.
Additional donations are sought to maintain existing items, to purchase new ones, and ultimately to provide other supportive services such as at-home physical therapy.
In an interview the day of the unit's opening, Arnold Roth said that Malki took an exceptionally strong interest in helping children with disabilities. She was sensitized to such needs from an early age because she helped care for her younger sister Haya Elisheva, who is blind and suffers from severe medical problems. Despite Haya's multiple challenges, and doctors' recommendations that she be institutionalized, her parents continue to care for her at home.
"Malki learned a lot about special needs children at home," explained Roth. "The week before she died she volunteered at a camp for the disabled. Thanks to her example, dozens of kids from her school are emulating her and volunteering as well."
At the age of 13, Malki heard about a neighborhood child with Canavan's, a rare and invariably fatal Jewish genetic disease that devastates children and their families.
Recalls her father, "one day she simply went over to the child's home and told the mother, 'I'm your volunteer for the summer.' She was incredibly sensitive to the needs of others."
Roth explained why his family chose this particular project, believed to be the first of its kind in the world.
"Not every family is able to or interested in keeping a disabled child at home," he said. "Jerusalem has many foundations and institutions which provide the solution for some families."
But for those families who are prepared to take on the challenge of personally caring for their children, the road is much rougher.
Unfortunately, Roth concluded, "the government finances [most treatment] only when given institutionally."
Roth said "Haya walks today thanks to the devotion of her mother and siblings. With the right therapy and love, other children could reach such milestones."
The Roths decided to create the foundation "to ensure that Malki was not just a statistic." They came up with the idea, he said, during the shiva period.
The family chose to work with Yad Sarah — a purely voluntary organization that serves 375,000 families as well as 4,000 terror victims — for several reasons.
During the past two years, Yad Sarah has assisted 4,000 victims of terrorism, in addition to the 325,000 families it serves annually. It provides the equipment and guidance to injured and disabled people once they leave the hospital.
On the security front, the organization recently purchased two bulletproof vehicles to transport people and equipment, and its emergency response center has stepped up its pace of installing home alarms, responding to the heightened level of anxiety among the elderly and disabled. It has installed personal alarm systems in kindergartens and nursery schools to allow for emergency contact in case of a terrorist attack.
"We want the Malki Foundation to be the antithesis of terror," Roth said. "We wished to commemorate Malki's memory through benevolent activity that brings people together, regardless of their religion or nationality. Yad Sarah's services are given to whoever asks for them, with no discrimination whatsoever."
In an "only in Israel" twist, an Arab family from Jerusalem was the very first to request assistance from the Malki Foundation. More than a year ago, Sharuk Hammed, then 10 months old, developed an infection and very high fever, which left her severely and permanently brain-damaged. When her condition finally stabilized, the toddler was transferred from Hadassah Hospital to the Alyn Hospital for Children, where the staff and her heartbroken parents provided her with the round-the-clock care necessary for her survival.
"We wanted her at home," said her father, Amjed, who quit his job in the building industry to care for his daughter. He and his wife also have another child with multiple disabilities as well as two healthy children.
Yad Sarah loaned the Hammed family a special wheelchair that enables the frail 2-year-old to sit up. It has enhanced her quality of life and eased some of the strain on her parents. "We are grateful that there are places like this, which help those in need, no matter where they come from, no matter what their religion," said Hammed.