Winter weather has arrived and for Noah this means he must stay indoors—virtually all the time. “He can go out for a minute maybe,” says his mother, Tricia, from the family’s home in Whitby, Ontario, a suburb of Toronto. “We’ve learned. When he was outside for too long, the next day he has a fever.” Noah was born with Pompe disease, a rare, inherited lysosomal disorder that affects several body systems, including his muscular and respiratory health.
“It’s a big weight on my shoulders,” says Tricia. “When it comes to decision making with Noah, I’m on my own. I have to do what’s best for him.” Even when it is not easy, she is forced to limit his physical activity.
As a single mom, Tricia already had a full plate before Noah was diagnosed with Pompe. She raised an older son, Daryn, and daughter, Malaika, who still lived at home when Noah came along. She worked as a pharmacy technician and with some help from family members and neighbors, had been able to get by.
Noah was born healthy. However, complications soon arose. Noah began getting sick from his baby formula, so Tricia exclusively breastfed him, but his developmental milestones were delayed. Doctors seemed relatively unconcerned. “They said, ‘we’ll just wait and see,’” she remembers.