Surrey Family's 120-km Walk for Rare Disease Cure

A Surrey family is about to undertake a 120-kilometre walk from Vancouver to the B.C. legislature in Victoria — all to raise $2.7 million for life-saving gene therapy for their three-year-old son, Gurmoh.

Gurmoh was diagnosed with a rare form of spastic paraplegia caused by a de novo mutation, a progressive neurodegenerative disease that will steal his mobility and independence without intervention. The family has identified a gene therapy treatment that could change his trajectory, but it comes with an extraordinary price tag and a ticking clock. Time matters when you're three.

This isn't a casual fundraiser. The walk is a statement — a physical commitment that mirrors the emotional and financial marathon parents face when their child's survival depends on access to cutting-edge medicine that exists but remains out of reach. Every kilometre is a conversation starter, a reason for strangers to ask why, to listen, and ultimately to contribute.

For families navigating rare disease diagnoses, the math is brutal: treatment costs, uncertainty about insurance coverage, and the relentless pressure to act fast. Gurmoh's parents have chosen visibility and movement as their strategy. A family walking across the province isn't easy to ignore.

The walk represents something deeper than fundraising — it's a reminder that some of the most important battles facing Metro Vancouver families happen quietly, in homes and hospitals, until someone decides to make them impossible to miss.