Looking back, trying to pinpoint the moment in 1990 when she first knew something was wrong, Julia Uihlein recalls a September afternoon, a soccer game and the ashen face of Alex, her 11-year-old son. Alex was not injured, but he had suddenly become so pale and ill looking that his coach pulled him out of the game. What had at first seemed to be the flu soon took a frightening turn. Constant, burning pain in his legs kept Alex awake at night. The slightest touch, even by a bedsheet, hurt unbearably. He began to have trouble walking.
The doctors were stumped....
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