In July 1998, Robert Stone was a healthy 13-month-old baby. Then, suddenly, he wasn’t. He began having one-minute spells of muscle failure, such as abruptly dropping a toy or falling over. After a few days, that escalated into 10-minute episodes that affected muscles throughout his body. He spent weeks in the hospital until doctors ruled out everything they could test for and sent him home. By age 3, Robert was confined to a wheelchair and eating through a tube. He seemed to understand everything around him but was unable to speak. For 13 years, his parents, Roger and Jeneva Stone, spent thousands of dollars (even with insurance) taking him from one hospital to another, searching for a diagnosis. They carried a binder stuffed with reports from more than 100 diagnostic tests. Just four showed anything out of the ordinary, and no one knew how to interpret any of them.
Then, in the summer of 2011, Jeneva heard about the Rare Genomics Institute, at the time a nascent nonprofit that sought to raise money to pay for sequencing the genes of children with mysterious diseases. RGI creates online fundraising campaigns for each child using the crowd-funding model most associated with Kickstarter. Crowd-funding works through Web pages that describe specific projects in need of money and solicit online donations—typically small contributions from family, friends, and friends of friends.
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