Feb 20, 2008 8:00 AM

Family strives to keep hope alive

In 1972, Reiner Stenzel was a young adjunct assistant professor at UCLA in the field of plasma physics when his daughters were born — identical twins Anabel and Isabel, who shared the genes of two cultures: Stenzel is German and his wife, Hatsuko Arima, is Japanese. Three days after the girls' birth, the parents learned that they shared something else: cystic fibrosis, an incurable disease that ravages the lungs. Doctors offered a grim prognosis of 10 years at the most.

Today the Stenzel twins are still very much alive, thanks to advances in medicine and the love and dedication of parents determined that their daughters would survive.

Anabel and Isabel recount their story in "The Power of Two: A Twin Triumph over Cystic Fibrosis."

Published last November and already in its second printing, the book describes the physical and emotional travails of a family walking the narrow ledge between life and death. The journey, their story makes clear, was not without its serious strains on the family — which includes an older brother, Ryuta — and the marriage.

"Certainly there were periods when it was difficult," said Professor Stenzel, "but we treated them with a positive attitude. We wanted them to have the same life as normal children."

Countless doctor's visits, life-threatening respiratory infections, digestive difficulties, chest percussion treatments several times a day to clear thick mucus from their lungs, heavy-duty medication and periods when the twins practically lived at Kaiser Permanente's hospital on Sunset Boulevard are hardly the stuff of a normal childhood. But they went to school, made friends, did household chores and even went on camping trips — respiratory equipment and medication in tow.

"My dad was blessed with a stable job at UCLA and stable health insurance," said Anabel, who lives in the Bay Area, as does her sister. "And we were blessed with his dedication."

Stenzel spent every lunch hour for three years driving from campus to his daughters' junior high school in Brentwood to give them respiratory treatments in a VW van he'd equipped with a generator to run the equipment.

Stenzel also nurtured his daughters intellectually, taking along a chess set and copies of National Geographic on hospital visits. Both Anabel and Isabel graduated from Stanford, received graduate degrees from UC Berkeley and work at a Stanford hospital as a genetic counselor and a community outreach coordinator, respectively.

More recently, both have had double lung transplants that buy them more time — but a transplant’s success averages only about seven years, Stenzel noted. Their newfound health enabled them to join their father — an avid mountaineer — on ambitious hiking expeditions to the Grand Canyon and the Appalachian Trail.

"He's a remarkable human being," Anabel said of her father. "He doesn't share what pressures he has had. He doesn't think about it as a big deal, but it is."

"They live with life and death," Stenzel said. "Their attitude is to live every day, because you don't know what's coming in the future."

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