A British Columbia family is urgently seeking government support to access a potential gene therapy for their three-year-old son, Gurmoh, who has been diagnosed with Spastic Paraplegia Type 4. This rare neurodegenerative condition causes stiffness and weakness in the legs and is progressive, meaning it will worsen over time.
Gurmoh is believed to be the only case of this condition in Canada. His parents, Navpreet and Stalin Gill, describe the diagnosis as devastating, noting that their son is already experiencing mobility issues and cannot play with children his age. The condition is aggressive and could potentially impact his arms, speech, and mental capacity.
The family is racing against time to secure gene therapy, which researchers at McGill University have agreed to develop. However, the estimated cost is $8 million. They have approached both the provincial and federal governments for assistance, but have been told they cannot help. The federal government has a national strategy for rare disease drugs with available funding, but the family faces significant systemic hurdles.
The Gills are also raising funds independently, highlighting the immense emotional and financial toll the illness has taken on their entire family and support network.