Bertrand's story hits The New Yorker!

Our family is grateful to journalist, bestselling author and MIT professor, Seth Mnookin.  His time, thoroughness, and dedication to the NGLY1 story were astounding.  We are also indebted to The New Yorker.  Their staff of editors and fact checkers left us awed.  This was a work of true, old-school journalism.  We're proud to be a part of it.

ONE OF A KIND

What do you do if your child has a condition that is new to science?

BY SETH MNOOKIN
JULY 21, 2014

Until recently, Bertrand Might was the only known patient with a certain genetic disorder. His parents began searching for others. Photograph by Phillip Toledano.

Matt Might and Cristina Casanova met in the spring of 2002, as twenty-year-old undergraduates at the Georgia Institute of Technology. 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. Within a year, they were married.

The couple had their first child, a son, on December 9, 2007, not long after Matt completed his Ph.D. in computer science and Cristina earned her M.B.A. They named him Bertrand, in honor of the British philosopher and mathematician Bertrand Russell. After a few blissful weeks, the new parents began to worry. 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. He also seemed to be in near-constant distress, and Matt’s efforts to comfort him “just enraged him,” Matt says. “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.

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. 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. “I didn’t have to. The number of them told me this was really bad.”  

Read the rest HERE.