VICTORIA, B.C.: BC Conservative MLAs are calling on the NDP government to immediately meet with the family of three-year-old Gurmoh Gill of Surrey, a boy with a rare, progressive neurodegenerative disease, and with researchers at McGill University’s The Neuro Institute, and to use all available provincial and federal funding mechanisms to secure Gurmoh the gene therapy he requires.
Gurmoh has been diagnosed with Spastic Paraplegia Type 4, a condition that will progressively rob him of his ability to walk, speak, and function independently. He is the only known case of this specific condition in Canada. According to leading SPG4 researcher Dr. Darius at Boston Children’s Hospital, approximately 207,000 people worldwide live with the disease, including 40,000 to 50,000 children, and due to limited testing and delayed MRIs, an estimated 80 to 90 per cent of cases are misdiagnosed as Cerebral Palsy. Neurologists at McGill University have committed to developing personalized gene therapy for Gurmoh, but an estimated $6–8 million is needed to move forward.
Steve Kooner, MLA for Richmond-Queensborough, pointed to the particular responsibility the province bears in this case. “I have known Gurmoh’s parents for years and I know they have spent their careers as practicing dentists giving back to British Columbia’s healthcare system. However, now when their family needed the province to stand behind them, they were turned away,” said Kooner. “The provincial government has access to funding and must use it, and if that means supporting treatment outside the province because no equivalent expertise exists here, that is what leadership requires. No British Columbian child should be left behind.”
“The researchers are ready. The technology exists. What Gurmoh needs is a government willing to act,” said Mandeep Dhaliwal, MLA for Surrey North. “I’ve spoken directly with his family and reviewed letters from physiotherapists, neurologists, and McGill experts. There is no question this treatment can be developed. The only question is whether this government will step up and help this three-year-old boy.”
“Every British Columbian living with a rare disease deserves support in accessing potentially lifesaving or life-altering treatment,” said Anna Kindy, MLA for North Island and Critic for Health. “The federal government has made up to $1.4 billion available to provinces and territories for exactly this purpose. This government has pledged to protect universal healthcare as a core service. That commitment must include those living with rare diseases.”
Every day without action is a day Gurmoh’s disease advances. The BC Conservatives are urging the provincial government to meet with the Gill family and the researchers at McGill and use the funding that exists to secure treatment for Gurmoh
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