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B.C. Government Partners with UBC, McGill to Develop Life-Saving Gene Therapy for Surrey Boy
The project follows a $2.7 million fundraising drive and aims to build a diagnosis-to-therapy pathway for children with rare genetic diseases.
- On Saturday, Health Minister Ravi Kahlon announced the Provincial Health Services Authority and BC Children's Hospital are partnering with UBC and McGill University's Montreal Neurological Institute-Hospital to create personalized gene-editing therapy for Gurmoh, a three-year-old from Surrey.
- The Gills raised over $2.7 million for Gurmoh, who has the only known case of his disease in Canada, prompting the Ministry of Health to act after the family's initial request three months ago.
- Gurmoh, a three-year-old from Surrey, has spastic paraplegia, a progressive neurodegenerative disease affecting spinal cord nerves that causes muscle stiffness and weakness. He remains joyful while "proudly wearing his fire hat," though his parents say time is not on his side.
- Navpreet Gill and Stalin said, "Today, we are deeply grateful to the provincial government, clinicians, researchers and everyone who have come together to support Gurmoh," hoping this journey gives hope to other families facing rare diseases.
- Dr. Federica Di Palma, PHSA chief health genomic officer, said this project will "build on B.C.'s existing strengths in genomics, clinical care and research" while creating a system to benefit children and adults with rare genetic diseases long into the future.
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