Jackson Leyden had always been a healthy kid; he practiced taekwondo, and he played lacrosse and baseball. But in 2011, a few months after his eighth birthday, he began having seizures several times a day. Many were brief, a half-minute of staring into space, but he also had severe episodes in which he would collapse, sometimes injuring himself. Over the next two years, he was hospitalized about 50 times, and he missed much of fourth and fifth grade.
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From their small town in southwestern Maine, Meagan and her husband, Ken, took Addy to Boston to consult with neurologists. These epileptic seizures, they concluded, were the result of a congenital brain malformation called schizencephaly. One of the hemispheres of Addy’s brain had not developed fully in utero, leaving an abnormal cleft. She also had a related condition called optic nerve hypoplasia, which caused her eyes to wander—and which, further tests revealed, made her all but blind. By summer Addy was having 20 to 30 seizures a day. Then 100 a day. Then 300. “Everything was misfiring all at once,” says Meagan. “We were afraid we were going to lose her.”
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