B.C. government partners with UBC, McGill to develop life-saving gene therapy for Surrey boy<\/p>\n
Published 1:19 pm Saturday, September 19, 2026<\/p>\n
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.<\/p>\n
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 \u201cproudly wearing his fire hat,\u201d but his parents say time is not on his side.<\/p>\n
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.<\/p>\n
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. <\/p>\n
Gurmoh\u2019s 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.<\/p>\n
The Gills met with then minister of health Josie Osborne on May 25 to discuss potential funding for Gurmoh\u2019s treatment.<\/p>\n
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.<\/p>\n
Now, several months later, the province has changed its tune, and Gurmoh\u2019s experience has shown the province the challenges that \u201cmany families affected by rare diseases face: not knowing where to turn when a diagnosis is made but no established treatment exists.\u201d<\/p>\n
\u201cWhen we first received Gurmoh\u2019s diagnosis, we didn\u2019t know if there was any hope,\u201d said the Gill\u2019s. \u201cToday, 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\u2019s journey could give hope for other children and families facing rare diseases.\u201d<\/p>\n
B.C.\u2019s minister of health, Ravi Kahlon, made the announcement Saturday (Sept. 19) in Vancouver that the \u201cProvincial Health Services Authority (PHSA) and BC Children\u2019s Hospital are partnering with the University of British Columbia and McGill University\u2019s Montreal Neurological Institute-Hospital (The Neuro) to establish a pathway from diagnosis to potential therapy for people with rare genetic diseases.\u201d<\/p>\n
\u201cLearning that your child has a rare genetic disease is stressful enough, so navigating what comes next should be as simple as possible,\u201d Kahlon said. \u201cEvery 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\u2019re 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.\u201d<\/p>\n
BC Children\u2019s Hospital will work with UBC to establish potential therapies for rare genetic diseases. The Ministry of Health said this will \u201cbuild on B.C.\u2019s existing strengths in genomics, clinical care and research while connecting patients to expertise beyond the province when needed.\u201d<\/p>\n
\u201cGenomic diagnosis is increasingly giving us answers for children with rare diseases,\u201d said Dr. Federica Di Palma, chief health genomic officer, PHSA. \u201cThe next challenge is turning those answers into opportunities for treatment. By combining British Columbia\u2019s 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.\u201d<\/p>\n
-With files from Liam Razzell <\/p>\n","protected":false},"excerpt":{"rendered":"B.C. government partners with UBC, McGill to develop life-saving gene therapy for Surrey boy Published 1:19 pm Saturday,…\n","protected":false},"author":2,"featured_media":902825,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[194299],"tags":[903,49,48,163792,87674],"class_list":["post-902824","post","type-post","status-publish","format-standard","has-post-thumbnail","category-surrey","tag-british-columbia","tag-ca","tag-canada","tag-lower-mainland","tag-surrey"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/posts\/902824","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/comments?post=902824"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/posts\/902824\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/media\/902825"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/media?parent=902824"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/categories?post=902824"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/tags?post=902824"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}