Photography: Frances Juriansz
When Lynn and Jason Hampson first saw the hint of yellow in their four-month-old son’s eyes in the winter of 2008, they didn’t think too much of it. The young parents assumed it was jaundice, a common illness that would pass with a little time under the hospital lamps. Instead, the colour spread. By the end of the week, Jason says Logan’s entire body was as “yellow as a Simpsons character,” and his stomach had filled with fluid, becoming distended.
Logan’s blood work revealed he was experiencing liver failure, but his doctors had no idea why. The family was transferred from their local hospital in Hamilton to department 6A—the transplant wing—in SickKids hospital in Toronto. The Hampsons didn’t know it then, but it’s where they would spend much of the next four years, a place they would ruefully come to call their home away from home.
As doctors began running tests on Logan, Lynn stayed at the hospital while Jason worked in Etobicoke, repairing rails for CN Rail all day before returning to sleep with his family. The tests came back negative, and after three weeks Logan began to recover. His energy returned, and his ailment seemed to disappear as mysteriously as it had come.
A year later, in January 2009, Logan got sick again. It was subtle, but something about the little redhead seemed off. The way the normally rambunctious toddler sat on the family couch—motionless, his eyes peering around the room—would have looked normal to a stranger. To his father, however, it set off a wave of dread.
Logan was once again transferred from his local hospital to 6A, where he soon improved, then fell ill again. In March, his belly swelled dramatically with fluid. This time, doctors stepped up their examinations. Logan was subjected to EKGs, echocardiograms, ultrasounds and MRIs. Every few days, the doctors would test for a new, scary-sounding disease. Lynn would put her son to bed, then surf the Internet to read up on its symptoms. She’d call up Jason the next day and share her worries. “They’re testing for Niemann-Pick,” she’d say. “Fatal by the age of three.”
Still, the doctors were stumped. “Sometimes, in pediatrics, we deal with diseases that have not been described fully,” says Yaron Avitzur, a member of the SickKids gastroenterology team that worked with the Hampsons. By now, though, it was clear that whatever was wrong with Logan was serious. “They said, ‘We’re afraid that the next time he gets a virus, it could be fatal,’” says Lynn.