A miracle that came too late

The Boston Herald

It was just a blurb in the paper, three paragraphs out of thousands, relegated to the bottom of a page. And why not? Troops are pouring into Somalia. The IRA is gift-wrapping bombs for Christmas. The fighting continues in Bosnia. Santa Claus is coming to town, as well as Arsenio to champion the fight against AIDS. We are duly occupied. Besides, how much space did this news need?

A National Institute of Health advisory committee approved for the first time human gene therapy experiments to treat cystic fibrosis, the most common lethal hereditary disease in the United States. Researchers plan to replace the defective cystic fibrosis gene, which causes premature death, with a healthy normal gene. Pretty basic. Pretty miraculous, too.

My friend Anne's daughter died of cystic fibrosis eight-and-a-half years ago. Amy was 11, in the sixth grade, and my daughter Lauren's best friend. We knew Amy was going to die, everyone knew, but we knew it intellectually the way we know that someday we'll grow old, and someday babies not even born yet will have gray hair. We didn't believe it, couldn't imagine it. Someday was theory. Amy's death was an eternity away.

And then it came, and it didn't seem real even then. Amy was a firefly, a Tinkerbell, always singing, dancing, laughing, playing the piano, playing dress up, playing life to its fullest. How could someone so alive, suddenly not be?

When someone dies, we tend to make that person far better in death than they ever were in life. We exaggerate their goodness and forget their flaws. We create a person who never was.

But Amy was too young to have any real flaws. She was stubborn. She argued with her mother. But was that a flaw? No, it was just part of her strength and part of her charm. She argued not like a little kid, not with whines and pouts and tears, but with intelligence and reason. She was her mother's equal. She used to win arguments, too, because she was relentless and passionate. You had to laugh, listening to the pair. They were cut from the same cloth.

Amy squeezed so much life into her few years. She took joy in every moment. She excelled at everything she did. She read voluminously, drew, wrote, acted, sang, played the piano and the recorder. When you walked away from her you always thought, she is so smart. She is so incredibly talented. In so many ways she was very adult.

But she was a child, too - still into make believe, still into "the handsome prince met the beautiful princess and they lived happily every after." And still into wishing on stars and chasing after rainbows.

We've tried to keep her alive, to hold on not just to her memory, but to her. We talk about her, laugh over the things she said. We try to imagine what she would be like today. But this gets more difficult every year. She would be 20 now, yet in our minds she remains 11. We could envision her 12 and 13. But 20? A woman, in college. She always said she wanted to go to Radcliffe.

I try to visualize her there. But the picture I see is of a child, tall like a grown-up, dressed like a grown up, but with a child's determined face.

You wait for a cure, and you pray for a cure. And when you read that gene therapy could save thousands of Amys, you are grateful, and you bow your head and give thanks. But you curse, too, because the timing is all wrong. Because eight years is nothing in the life of the world, not even a flinch in eternity. And when you read that patients today will be able to inhale a good gene to replace the bad gene, you weep because the miracle came too late for Amy.