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Children's hospice in danger of closing

George Mark Children's House, which is funded through donations and is the only free-standing hospice and respite-care center for children in the U.S., has only enough money to operate through June.

March 28, 2009|Maria L. La Ganga

SAN LEANDRO, CALIF. — At this late date, about the only thing Mary Stark can protect her son from is bad news.

Brandon is dying. He spends much of the day in an old La-Z-Boy recliner that his father rigged on wheels. A NASCAR quilt his mother made is tucked up under his chin. His ventilator hisses quietly.

Stark's son is in "his favorite place in the world." Not a hospital, not his bedroom, but by the nurses' station at George Mark Children's House, the only free-standing hospice and respite-care center for children in the country.

Brandon has been here since Jan. 15. His status is day-by-day. And so is George Mark's.

Brandon's foe is a degenerative disorder called Duchenne muscular dystrophy. The hospice is a victim of the economy; donations have dropped so fast and so far that there is only enough money to operate through June.

Stark has shielded her son from the news, but it eats at her as she sits by his side in the bright Craftsman house on an East Bay hill, loving her boy and waiting for the end.

"That's my worst fear," said Stark, 43, "that Brandon's going to get ready to go and he's going to get interrupted and have to leave because there's no money. . . . I couldn't even imagine. I couldn't even imagine."

More is at stake than just the well-being of families. Nearly a dozen facilities, modeled after this hospice, are in the works nationwide. George Mark's failure would be a blow to their prospects and to a medical discipline, which, at 10 years old in the United States, is still as youthful as many of its patients.

"It would be devastating for the whole newly emerging field of pediatric palliative care," said Dr. Barbara Sourkes, director of palliative care at Lucille Packard Children's Hospital at Stanford. "Across the country, George Mark stands for so much. It would send an absolutely terrible message."


Brandon "is on his own journey plan," his mother said one recent afternoon, a trip she never anticipated when her oldest son was born 22 years ago.

It wasn't until he was 5 that Brandon was diagnosed with a form of muscular dystrophy that largely afflicts boys, strips them of their ability to walk and then breathe, and frequently kills them by the time they are college age.

His odd gait -- arched back, chest thrust out -- was the first indication. He had a hard time running and getting up when he fell. He was in a wheelchair by 7, had a tracheotomy at 19. His digestive system began to fail when he was 20. These days, he is too out of breath to talk.

Taking care of a child with what doctors call a "complex, chronic, life-threatening illness" is not impossible, Stark says, but it turns a home into a hospital and a family into an overworked support staff.

"At home, I was his nurse and doctor and social worker," she said. "Being here, I can be his mom again, just hang out, love him, wipe his face, have patience."

Brandon started coming to George Mark Children's House in 2006 to give his exhausted parents an occasional weekend off. He was 19 and still under the care of pediatricians because he suffers from a childhood disease.

Stark describes her son's condition as a slow downward drift, steep declines followed by long plateaus. Last October, he spent a week in the hospital. At Thanksgiving, he took a bad turn. The family celebrated Christmas early, just in case.

By mid-January, "he looked at me and said he needed to come to the George Mark House," Stark recounted. "We thought he wouldn't last a week. He went outside for the first time in six months -- at 10 at night to look at the stars. You learn it's OK."

Brandon stays in an Olympics-themed room with hidden hospital equipment. Mary and her husband, Steve, sleep there with him. Zachary, Brandon's brother, and Sasha, the family dog, stay in one of two family suites.

Steve leaves before sunrise to go to work in San Francisco, where he maintains mechanical systems in high-rises. Zachary, 15, attends high school through an independent study program, goes to karate twice a week and church on Wednesdays.

"In a hospital, you can't be a family. You can't bring your family pet," Stark said. At home, "there's no way I could afford this 24-hour care, food, laundry. . . . My family would be a mess without this place."


A stroll through George Mark Children's House is less about the rooms -- though they are bright and well-appointed -- and more about the children who have filled them.

The 15,000 square-foot facility has eight patient rooms and two family suites. Staff and families dine together in the big, open kitchen called Ruth's Cafe. There's a computer room for parents and a playroom filled with books and toys, a pool table and foosball.

The facility, which opened five years ago, is named for two brothers of co-founder Kathy Hull, a clinical psychologist. Mark died at 16 in an automobile accident. George died seven years later of melanoma. The cafe is named for Hull's mother.

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