JERSEY GAUDET, AGE 4

Many families travel to the Janeway on an ongoing basis to ensure their children receive specialized treatments or tests. Jersey and her family travel to the Janeway, every two weeks, all the way from Port Aux Basques.

Jersey is the first child in Newfoundland and Labrador to receive ground-breaking treatment for CLN2 Batten Disease — a rare, fatal disease of the nervous system. Before receiving the enzyme replacement therapy treatments, Jersey needed a battery of tests — one of which was an MRI — before she could have her surgery to place an intraventricular access device (port) in her skull.

Every two weeks, for the rest of her life, this port in Jersey’s skull will deliver her enzyme replacement therapy treatments directly into the fluid surrounding her brain, through a method known as intraventricular infusion (the delivery of a drug into a fluid-filled cavity within the brain or heart).

“Jersey is absolutely thriving, and we owe it all to the Janeway team for never giving up, even when presented with obstacles,” says her mom, Brittany. “They are our supports, our friends, but most of all they have become our family.”