A Cause For Joy
CBS News Sunday Morning Correspondent Rita Braver finds one family that has found a way to celebrate the season despite some bad news. An archive of The Braver Line is available. Rita Braver's email address is rbc@cbsnews.com.
The house seems to shout with joy. Christmas lights twinkle. The tree shimmers. Teddy bears in every conceivable size, color and holiday ensemble festoon the front staircase. And best of all, there's a pink wooden stork on the front lawn, bearing the glad tidings that "it's a girl."
That little girl is baby Brianna. She is pink and perfect and doted on by her parents, George and Sheryl Battung, her brother Bradley and sister Brittany.
And as you watch this golden California family gather for dinner, with Brianna snuggled into her baby seat and perched right on the table and the rest of the family chattering and laughing, you have to wonder if you've accidentally stumbled into the filming of a Hallmark card commercial.
But guess what? These people are for real. They honestly love each other. They are hard working. They are churchgoing. They are also facing a devastating reality.
Earlier this year George took a test that showed he carries the gene for spinal cerebellum ataxia-1, also known as SCA-1. It's a disease that strikes in adulthood. It attacks the nerves of the spinal cord. Slowly the body's coordination starts to fail. Arms, legs, feet and hands no longer work. Speech becomes impossible.
Eventually, SCA-1 is fatal. George watched his beautiful, vibrant mother die from it, though at the time, no one was certain what she suffered from. His aunts and uncles were struck down, too. But it was only recently that the test became available to determine who carries the gene for SCA-1.
At age 35, George says he does not have any symptoms of the disease. But he decided to take the test because he wanted to know how to plan for the future. "It was scary," he said. "But it was almost a relief. Because I've been going...twentysomething years I've been thinking am I going to have it or not?"
But now the question is whether George has passed on the gene for SCA-1 to his children. Brittany, 14, will not be affected. She is Sheryl's daughter from a previous marriage and no blood relation to George. But what about 7-year-old Bradley and baby Brianna?
Bradley cannot be tested for now. Under California state law, no child can be tested for any genetic disease. At age 18, a young man or woman can make his or her own decision. There was no prenatal test available at the time of his birth.
But there is one now, and it would have been possible for George and Sheryl to have a prenatal test done on Brianna.
They chose not to. There were many reasons. For one thing even if they had known she carried the SCA-l gene, they never would have gone forward with te pregnancy.
Says George, "My dad told me, 'If we would have known about this disease before we had you kids, we would have never had children. We would have adopted.'"
George's reaction? "Dad, if I didn't have so much respect for you, I'd smack you. I've had a wonderful life. A wonderful life."
But it's not just the fact that George has had at least 35 good years that kept the Battungs from having a prenatal test. He says he doesn't want his daughter to be concerned about something "that's not going to even affect her until she's in her thirties. And if it does, there might be a cure or might be a treatment for the disease thirtysomething years from now!"
For George, the very fact that it's finally possible to detect who carries the gene for SCA-1 means that there is great likelihood of finding a way to block it.
And indeed, a continent away, at the National Institutes of Health just outside Washington, D.C., Dr. Francis Collins shares George Battung's optimism. Collins is head of the Human Genome project. For the first time in human history, scientists are actually mapping our DNA, figuring out what makes us who we are.
In the next millennium, Collins predicts, "Medicine will be transformed in ways that I think we can't even quite glimpse." That will mean gene-based therapies that use the bodies' own substances to counter or prevent hereditary diseases.
So in that California house, with the lights and the tree and the teddy bears and the new baby, where there could be a sense of dispair, there is truly a reason for joy and hope in this holiday season.