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Tennessee Parents Hunt Genetic Killer

The Tennessean,  July 31, 2011
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John and Laurian Scott's daughter Thisbe and son Noah were ravaged by a rare genetic disorder that science could not explain. The couple tracked down the mysterious disease that killed their children and put it in the cross hairs of the world’s top scientists. Through the international efforts of this Tennessee couple, geneticists cracked the code that had stumped science for more than a century. Now, researchers can look for a cure that also could unravel the secrets behind similar diseases, including Lou Gehrig’s and spinal muscular atrophy. Today, the couple's 3-month-old twins are the first children in the world to be tested for the disease that killed their brother and sister, Brown-Vialetto-Van Laere syndrome. The twins were conceived via IVF and tested before they ever entered their mother's womb.

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