Surrey family travels to Ottawa to raise awareness for kids with rare diseases

Surrey family travels to Ottawa to raise awareness for kids with rare diseases

Published 9:00 pm Wednesday, June 3, 2026

A Surrey family is travelling to Parliament Hill in Ottawa to raise awareness for children battling rare diseases, including their three-year-old son, who is facing 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 one of the few known cases of the disease in Canada. McGill University has already committed to developing a personalized gene therapy for him.

The initial costs are to “initiate and accelerate the development of his gene therapy,” the family said. But the total costs will be around $6 to $8 million to develop, research, and run pre-clinical and clinical trials.

The family has raised $2.2 million in seven weeks through an online fundraiser, community support, radiothons, and a 120-km walk from Vancouver to the B.C. Legislature in Victoria.

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