Surrey family plans 120-km walk to fund life-saving gene therapy for 3-year-old<\/p>\n
Published 11:00 am Wednesday, May 20, 2026<\/p>\n
A Surrey family is walking 120 kilometres from Vancouver to the B.C. legislature in Victoria to raise money for their three-year-old <\/a>son<\/a>, who is battling a rare and progressive neurodegenerative disease.<\/p>\n 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.<\/p>\n Gurmoh\u2019s 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.<\/p>\n 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.<\/p>\n 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.<\/p>\n \u201cWe are walking because our son deserves a chance at life before this disease steals it from him,\u201d said Gurmoh\u2019s mother, Dr. Navpreet Gill. \u201cEvery 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.\u201d<\/p>\n They will make several stops along the way to raise funds, including at the Gurdwara Sukh Sagar in New Westminster and at Tsawwassen Mills.<\/p>\n The family is only $700,000 short of the initial goal of $2.7 million needed to \u201cinitiate and accelerate the development of his gene therapy.\u201d<\/p>\n But the total costs will be around $6 to $8 million to develop, research, and run pre-clinical and clinical trials.<\/p>\n