Their courage is breathtaking

The Boston Herald

Somewhere, on an old home movie, still on a reel, are seconds of Amy doing cartwheels in my garage. The film is dark, so her face is hidden. But you can see clearly her small, thin body, her short, straight hair and her dark-rimmed glasses, which, even when she wasn't doing cartwheels, were always slipping down her face.

Amy did cartwheels the way she did everything, as if she had to do as many as she could, while she could. As if she knew she had to set records in record time.

The camera caught her on a summer day when she was 8 - no shoes, white socks, black leotard, legs straight, toes pointed, spinning like a windmill on a hard cement floor. And then the camera moved to my daughter, Lauren, Amy's best friend, and captured the pair of them spinning, two wagon wheels, permanently side by side.

They should still be side by side. They should still be best friends. But Amy died a week before her 12th birthday, 18 years ago. She had cystic fibrosis, a genetic disease that destroys lungs and, back then, children with CF didn't live much beyond childhood. Today children born with CF live an average of 32 years.

Last week, National Public Radio broadcast excerpts of an audio diary kept by a 21-year-old with CF. For the past two years Laura Rothenberg has talked intermittently into a tape recorder about her life and her disease. "My So Called Lungs," a 22-minute tape, is the result. Part of a series called "Radio Diaries," it can be accessed online at www.radiodiaries.org. "I was diagnosed with CF when I was 3 days old," Laura said in a voice that, for me, brought back Amy's. "I was 3 months old when my doctors realized I had cystic fibrosis," Amy wrote in a journal she used to keep. "When I was 12 and 13, I met a lot of kids in the hospital with CF," said Laura. "Gina died when we were 13. Damien died that year. He was 17. My friend Sophie died when she was in 11th grade. She was one of my best friends with CF. And my friend Marcy died this past summer."

Amy wrote about John Duckworth, "a fantastic 4-year-old boy. I cried and cried when he died. He was one of the sweetest children. I never heard him complain." Laura discovered the seriousness of her disease when a newspaper article forced her father to tell her that CF is fatal. Amy also found out from a newspaper. "I found a newspaper clipping of an article that had been done on my family and me a long time ago. The headline read something like 'Knowledge helps Sahlin family cope with fatal illness.' I can still feel how terrifying and awful it was to associate the word fatal with me."

Laura had a lung transplant last year. "I'm happy I made it," she said, though her body is in "mild rejection." "My whole life I've been searching for something to fix me and this hasn't." But it still might.

I wish Amy had had this chance. I wish you could pluck back all the people who died from diseases that people now live with and give them their lives back. "I want to walk from my dorm to the main green and maybe even play soccer. I haven't done that in eight years," said Laura, who returns to Brown as a junior this fall. Amy might have gone to Brown, though Radcliffe was her first choice. She was that smart. And that plucky about the future. "I've always been scared that people will forget about me," said Laura in a voice that is young, but old, too. Laura shouldn't worry. People will never forget her. People don't forget courage. People haven't forgotten Amy.

When I hear the clear, sweet notes of a recorder, I remember her, lips pursed, brow furrowed, concentrating on the scale. When I see a skinny little girl with glasses and a big smile, I smile. When I'm at a furniture store and walk past a high bed with a footstool, I picture Amy in her bed, feet above the floor. She's still around. She's all around. She inspires her mother, her father, her brother, my daughter and everyone who knew her, including me.