Gamble pays off in rare disease

0 Comments | USA TODAY, June, 2008 | by Liz Szabo

Two-year-old Nate Liao has spent his young life swathed in bandages from head to toe.

Nate has a rare and deadly genetic disease that prevents his skin from attaching to his body. The slightest friction against his skin, such as the rubbing of the seam from his shirt, gave him blisters the size of water balloons. Swallowing anything but baby food tore his esophagus.

Yet today, seven months after an experimental therapy at the University of Minnesota Children's Hospital Fairview, the New Jersey toddler is eating Oreos. He's slurping chicken noodle soup, cleaning his bowl and holding up his spoon for more. He's wearing a regular T-shirt. And, for at least a few hours a day, some of his bandages are coming off.

For the first time, doctors say, they...

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