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By then, Matt had a new job, as an assistant professor at the University of Utah’s School of Computing.It took two months to get Bertrand on the schedule of a developmental specialist in Salt Lake City, and the first available appointment fell on the same day as a mandatory faculty retreat.As Matt tried to get a foothold in his new job, Cristina struggled to care for a wheelchair-bound child whose condition seemed to worsen by the day.That afternoon, when Matt was able to check his phone, he saw that Cristina had left several messages.“I didn’t listen to them,” he told me in an e-mail. The number of them told me this was really bad.” Bertrand had brain damage—or, at least, that was the diagnosis until an MRI revealed that his brain was perfectly normal.When Bertrand was fifteen months old, the Mights were told that urine screening suggested that he suffered from one of a suite of rare, often fatal diseases known as inborn errors of metabolism.During the next three months, additional tests ruled out most of those ailments as well.After a new round of lab work was done, Bertrand’s doctors concluded that he likely had a rare, inherited movement disorder called ataxia-telangiectasia.
Matt Might and Cristina Casanova met in the spring of 2002, as twenty-year-old undergraduates at the Georgia Institute of Technology. Matt and Cristina described Bertrand to friends as being “jiggly”; his body appeared always to be in motion, as if he were lying on a bed of Jell-O.Cristina was an industrial-design major with an interest in philosophy; Matt was a shy computer geek obsessed with “Star Trek.” At first, Cristina took no notice of him, but the two soon became friends, and that fall they began dating. The couple had their first child, a son, on December 9, 2007, not long after Matt completed his Ph. He also seemed to be in near-constant distress, and Matt’s efforts to comfort him “just enraged him,” Matt says. After a few blissful weeks, the new parents began to worry. They named him Bertrand, in honor of the British philosopher and mathematician Bertrand Russell.“I felt like a failure as a father.” When the Mights raised their concerns with Bertrand’s doctor, they were assured that his development was within normal variations.
Not until Bertrand’s six-month checkup did his pediatrician agree that there was cause for concern.