Surrey family plans 120-km walk to fund life-saving gene therapy for 3-year-old

Surrey family plans 120-km walk to fund life-saving gene therapy for 3-year-old

Published 11:00 am Wednesday, May 20, 2026

A Surrey family is walking 120 kilometres from Vancouver to the B.C. legislature in Victoria to raise money for their three-year-old son, who is battling a rare and progressive neurodegenerative disease.

Gurmoh was diagnosed with a rare form of spastic paraplegia, which is caused by a de novo mutation (meaning a genetic mutation not present in either parent). This mutation is often associated with severe early onset of the disease, and kids with it can experience progressive muscle stiffness, speech problems, and weakness in the legs. It affects nerves in the spinal cord that control movement.

Gurmoh’s parents, Stalin and Navpreet Gill, are working to raise $2.7 million to help pay for the creation of personalized gene therapy for Gurmoh, who has the only known case of the disease in Canada.

The funds raised would go towards the estimated costs of developing and delivering the gene therapy. Navpreet said that McGill University has already committed to developing a personalized gene therapy for their son.

The walk starts at 10:30 a.m. on Thursday (May 21) at Canada Place in downtown Vancouver and continues until May 25 when they reach the legislature in Victoria.

“We are walking because our son deserves a chance at life before this disease steals it from him,” said Gurmoh’s mother, Dr. Navpreet Gill. “Every kilometre is for Gurmoh and for every family fighting a rare disease without support. We invite people across British Columbia to walk beside us, meet us along the way, or stand with us at the legislature.”

They will make several stops along the way to raise funds, including at the Gurdwara Sukh Sagar in New Westminster and at Tsawwassen Mills.

The family is only $700,000 short of the initial goal of $2.7 million needed to “initiate and accelerate the development of his gene therapy.”

But the total costs will be around $6 to $8 million to develop, research, and run pre-clinical and clinical trials.

The family raised most of the money through community support, GoFundMe, and radiothons.

“This walk is their final push to turn hope into action and bring Gurmoh closer to a future where he can keep walking, playing, and growing up like every child deserves,” said a press release about the walk.

People are encouraged to join the family on portions of the walk and/or welcome them at stops along the route. The family will also host a public fundraiser and awareness campaign outside the B.C. legislature on May 25- 26, “calling for greater support and infrastructure for families battling rare diseases in British Columbia.”

Here is the family’s planned schedule:

Day 1 – Thursday, May 21

Media Interaction: 10:00 a.m. Canada Place

10:30 a.m.: Canada Place, Vancouver

12:00 p.m.: Kingscrest Park (30 min break)

2:30 p.m.: Central Park (1 hour break)

5:45 p.m.: Gurdwara Sukh Sagar, New Westminster (end day 1 with fundraising till 7 p.m.)

Day 2 – Friday, May 22

9:00 a.m.: Gurdwara Sukh Sagar, New Westminster

11:30 a.m.: Maltina Pizza Kitchen (break 30 mins)

2:00 p.m.: Deas Island Park (break one hour)

4:30 p.m.: Save-On-Foods (48th Avenue, Delta) (break 30 mins)

6:00 PM: Tsawwassen Mills (end of Day 2 with fundraising till 7 p.m.)

Day 3 – Saturday, May 23 | Family & Kids Day

9:00 a.m.: Departure from Tsawwassen Mills

10:15 a.m.: Families and children are invited to join the walk aboard the ferry to Vancouver Island.

12:30 p.m.: Swartz Bay Ferry Terminal

3:00 p.m.: Sidney Museum (end of Day 3)

Day 4 – Sunday, May 24

9:00 a.m.: Sidney Museum

11:15 a.m.: Heritage Acres (one-hour break)

2:15 p.m.: Parker Beach (one-hour break)

4:15 p.m.: McMinn Park (30-minute break)

7:00 p.m.: Gurudwara Singh Sabha, Victoria

Day 5 – Monday, May 25

9:00 a.m.: Walk from Gurdwara Singh Sabha, Victoria

9:45 a.m.: Arrival at the B.C. legislature