Zandyr
Zandyr is a ten-year-old boy born with Primrose syndrome, a rare genetic disorder with fewer than a thousand cases ever documented. Caused by mutations in the KCNH1 gene, this condition affects potassium channels that regulate electrical activity in cells. As a result, Primrose syndrome has left Zandyr both deaf and blind, in addition to causing developmental delays.
Zandyr loves trains and boats, and his adventure was the perfect blend of both! With the assistance of our family coordinator, Zandyr and his family began their day by boarding the iconic Alaska Railroad train, journeying through the stunning wilderness all the way to Spencer Glacier. At the stop, they joined Chugach Adventures for an unforgettable rafting experience. Thanks to the rafting guides, Zandyr was able to touch and feel the glacier ice. It was a day filled with memories that Zandyr and his family will treasure forever.
