B.C. government partners with UBC, McGill to develop life-saving gene therapy for Surrey boy

B.C. government partners with UBC, McGill to develop life-saving gene therapy for Surrey boy

Published 1:19 pm Saturday, September 19, 2026

The Ministry of Health annouced Saturday (Sept. 19) that it would work with two Canadian universities to create a personalized gene-editing therapy for a young Surrey boy battling a rare, progressive neurodegenerative disease.

Gurmoh is a joyful three-year-old boy from Surrey who dreams of becoming a firefighter one day and drives his toy truck around the house while “proudly wearing his fire hat,” but his parents say time is not on his side.

Gurmoh was diagnosed with 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 difficulties, and weakness in the legs. It affects nerves in the spinal cord that control movement.

The announcement comes less than a week after the family raised over $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.

Gurmoh’s parents, Stalin and Navpreet Gill and many members of the community held countless fundraisers over the past five months, including walking from downtown Vancouver to the legislatrue in Victoria to raise awareness for children with rare diseases.

The Gills met with then minister of health Josie Osborne on May 25 to discuss potential funding for Gurmoh’s treatment.

The minister told the family that this sort of funding is not something they can do instantly, Stalin said at the time. But he pointed out the request for funding was not new information for the ministry, as the family had first reached out three months ago. At that time, Gurmoh was able to climb the stairs much easier than he is now, Stalin said.

Now, several months later, the province has changed its tune, and Gurmoh’s experience has shown the province the challenges that “many families affected by rare diseases face: not knowing where to turn when a diagnosis is made but no established treatment exists.”

“When we first received Gurmoh’s diagnosis, we didn’t know if there was any hope,” said the Gill’s. “Today, we are deeply grateful to the provincial government, clinicians, researchers and everyone who have come together to support Gurmoh and explore a potential treatment. This work gives our family hope for the future, and we are especially thankful that Gurmoh’s journey could give hope for other children and families facing rare diseases.”

B.C.’s minister of health, Ravi Kahlon, made the announcement Saturday (Sept. 19) in Vancouver that the “Provincial Health Services Authority (PHSA) and BC Children’s Hospital are partnering with the University of British Columbia and McGill University’s Montreal Neurological Institute-Hospital (The Neuro) to establish a pathway from diagnosis to potential therapy for people with rare genetic diseases.”

“Learning that your child has a rare genetic disease is stressful enough, so navigating what comes next should be as simple as possible,” Kahlon said. “Every diagnosis should be an opportunity, not an end point. By investing in cutting-edge gene-editing research and creating a first-of-its-kind diagnosis-to-therapy pathway in British Columbia, we’re helping families access potential treatment opportunities sooner while building a system that can benefit children, as well as adults, with rare genetic diseases long into the future.”

BC Children’s Hospital will work with UBC to establish potential therapies for rare genetic diseases. The Ministry of Health said this will “build on B.C.’s existing strengths in genomics, clinical care and research while connecting patients to expertise beyond the province when needed.”

“Genomic diagnosis is increasingly giving us answers for children with rare diseases,” said Dr. Federica Di Palma, chief health genomic officer, PHSA. “The next challenge is turning those answers into opportunities for treatment. By combining British Columbia’s genomic and clinical capabilities with specialized therapy-development expertise, we can create a pathway that begins with one child but is designed to help many more families in the future.”

-With files from Liam Razzell