MCKINNEY, Texas (AP) — Ever since doctors diagnosed his son with a rare disease, Doug Woleben has spent every evening on his computer, searching for a way to save the 6-year-old's life.

He has mastered the foreign language of medical literature, corresponded with drug companies, flown his family long distances for experimental treatments and emailed academic researchers who might know of something, anything, that could help his son.

Some days have brought hope, but many more have brought frustration.

There was the time Doug, an engineer for a telecommunications company, read about a promising...