AT BIRTH, TWINS YISREAL AND SHIFRA appeared in perfect health. Then, at eight months, they stopped rolling over or holding their bottles. Their parents, Rabbi Pinchas and Chana Shedrowitsky, were shocked by the diagnosis: Tay-Sachs Disease (TSD), a fatal genetic disorder that causes progressive destruction of the central nervous system. With it came worse news: Children with TSD usually die by age five.

For nine months, the family struggled to make decisions about the twins' care. Medical emergencies meant frantic visits to the hospital, where doctors could do little or nothing. Each trip was increasingly disruptive for the infants and the family, which includes four healthy boys, ages seven to 14. "I didn't know how we were going to handle everything," says Chana. "That was the hardest time."

Then, they learned about TrinityKids Care, the only pediatric hospice care in Greater Los Angeles, which is dedicated to helping families let their terminally ill children and adolescents die at home.

The Weingart Foundation has provided a $100,000 grant to TrinityCare Hospice, the oldest and largest regional non-profit hospice in Southern California, to support TrinityKids Care, which has aided more than 50 families since its founding in 2001. "It's been such a blessing," says Chana. TrinityKids Care combines an expertise in end-of-life issues and pediatrics to offer 24-hour, on-call support and comfort. Its services include case management, specialized nursing skills, pain relief, assistance with medications, family counseling, and sibling care, plus a two-year bereavement program.

The pediatric hospice team - a medical director, registered nurse, social worker, chaplain, home health aide and trained volunteers - tailors its services for each family, working with the patient's physician. Kelly Clem, RN, patient care manager, gently guides family members through the dying process. "I encourage them to communicate and look for ways to provide closure," she says.

Thanks to hospice care, Yisreal and Shifra, now three, can reside in a bedroom of soothing blues and pinks. So far, any crises have been handled at home. Unable to speak or move on their own, the twins convey subtle clues through sighs or expressions. "They know they're home and loved by their family," says their mother.

One of her sons programmed the family telephone to dial the hospice team. "We don't call 911," explains Chana. "We call TrinityKids Care."