Province, universities join to pursue bespoke gene treatment for Surrey child
The British Columbia Ministry of Health has announced a collaboration with the University of British Columbia and McGill University to develop a personalised gene‑editing therapy for a three‑year‑old boy from Surrey who is living with a rare, progressive neurodegenerative condition.
The child, identified in media reports as a joyful youngster who enjoys driving his toy truck and dreams of becoming a firefighter, was diagnosed with spastic paraplegia caused by a de novo mutation — a genetic change not present in either parent. According to the family and the announcement, he represents the only known case of this particular presentation in Canada.
"When we first received Gurmoh’s diagnosis, we didn’t know if there was any hope," said the
Less than a week before the ministry’s announcement, the boy’s family and their community had raised more than $2.7 million to support the development of a personalised therapy. The fundraising effort included numerous community events and a high‑profile walk from downtown Vancouver to the legislature in Victoria to raise awareness for children with rare diseases.
Family members met the then‑minister of health, Josie Osborne, on May 25 to discuss potential support for the experimental treatment. At the time, the family said the ministry indicated immediate funding was not possible. In the months that followed the child’s mobility declined, according to the family’s account shared with local media.
The ministry’s decision to partner with two Canadian research institutions signals a shift in its approach to at least one case where there is no established treatment. Provincial officials described the move as an effort to support a pathway for developing a highly personalised intervention when traditional therapeutic options do not exist.
What the collaboration entails — and what it does not
The announcement named the two universities as partners in developing a tailored gene‑editing therapy, but public reports did not provide detailed timelines, budgets, or specific technical steps for treatment development. Gene‑editing approaches are complex: they typically require precise design and extensive laboratory and clinical evaluation before any therapy can be offered to a patient.
Experts caution that personalised therapies — especially those created for ultra‑rare, one‑off mutations — involve scientific, regulatory and ethical hurdles. Clinical translation can take months to years and depends on rigorous safety testing.
| Detail | Reported information |
|---|---|
| Patient | Three‑year‑old boy from Surrey |
| Diagnosis | Spastic paraplegia from a de novo mutation |
| Funding raised by family/community | $2.7 million+ |
| Partners named | Ministry of Health, UBC, McGill University |
Community action pushed the issue into the open
The family’s campaign — described in media accounts as a series of fundraisers over five months — brought local attention to the challenges faced by families confronting rare diseases: limited treatment options, steep costs for experimental care, and a scarce set of pathways to government support.
Local fundraisers reportedly included an extended walk to Victoria to speak directly to lawmakers and raise public awareness. Those efforts appear to have accelerated discussions with provincial officials and research partners.
- More than $2.7 million was raised by the family and community to pursue a personalised therapy.
- The family met the health minister on May 25 to request provincial assistance.
- The case has been described as the only known instance of this specific mutation in Canada.
For Surrey and the Lower Mainland, the case underscores the growing role that patient advocacy and community fundraising play in accessing cutting‑edge biomedical research. It also raises questions about how publicly funded health systems should respond when potentially life‑saving experimental therapies are available only through bespoke scientific efforts.
Next steps and practical considerations
Officials said the universities will work with the ministry to explore the feasibility of developing a personalised gene‑editing approach. Given the novel nature of such a project, families and clinicians can expect a process that includes laboratory design, preclinical testing, ethical review, regulatory approvals and possible clinical application — steps that invite careful oversight.
Families and caregivers seeking information about rare neurological disorders or therapeutic trials should consult their treating specialists and provincial health resources. Local hospitals, genetic clinics and patient‑advocacy organisations can also provide guidance on diagnostic clarification, clinical trials and financial resources.
This developing story intersects science, policy and community action. As the province and research institutions map out next steps, the outcome will be closely watched by families across B.C. confronting rare, often isolating conditions for which standard treatments do not exist.
