When Elizabeth Lee Hallam was born on Sept. 29, 2003, she was a textbook example of the perfect baby. But by 8 months of age, she was battling a fatal genetic disease her family had never heard of. Elizabeth was diagnosed with the most acute form of spinal muscular atrophy, a motor neuron disorder similar to Lou Gehrig’s disease that afflicts one in 6,000 babies. With no cure or treatment, the doctor predicted Elizabeth – like 95 percent of all SMA babies – would not live more than two years.

“I screamed when we got the news,” said her grandmother, Jeanna Huette, 48. “I could not understand how such a beautiful child could just die. I cried for a few more days … and then I knew I had to save her.” As Elizabeth approaches her third birthday, she cannot sit, stand, crawl or walk and relies on machines to swallow, get nourishment and even cough. But she is alive and improving.

Her family enrolled Elizabeth in a trial designed to test the safety and effectiveness of the drug hydroxyurea against SMA. It is one of only a few clinical studies on the disease approved by the Food and Drug Administration and is run by Dr. Ching Wang, a scientist affiliated with Stanford University who has made conquering the disease his life’s work.
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