Ayra singh was born in March 2000, sat up and crawled on schedule but never really walked right. Pediatricians said at first that she was simply a late bloomer. But at 17 months she could take only four or five steps before falling. In August 2001 a doctor friend of Ayra's parents, Loren Eng and Dinakar Singh, saw her stumbling around at a party in New York. Visibly alarmed, she told Loren and Dinakar to take the child to a neurologist as soon as possible. A frantic round of visits to specialists ensued. It took more than a month to get blood-test results. The wait was particularly harrowing for Loren, who was eight months pregnant with her second child. Finally, two days before Loren was scheduled to deliver, the neurologist called at dinnertime. Ayra had spinal muscular atrophy, or SMA, a progressive and fatal disease in which the nerves that control the muscles slowly waste away. He said he was very sorry and hung up before Loren could ask a single question.
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