Nine-year-old's rare disease sparks community fundraiser

Jack Laidlaw is nine years old and dreams of walking on Mars. In 2023, he was diagnosed with hereditary spastic paraplegia type 4 (SPG4), a rare genetic disease affecting less than 0.01 per cent of the population.

SPG4 causes degeneration of upper motor neurons in the brain and spinal cord, leading to muscle weakness and stiffness in the legs. As the disease progresses, people eventually lose the ability to walk. There is currently no cure or treatment.

Jack's mother, Anna Laidlaw, describes how the disease has already changed his daily life. "He will run for about 10 seconds, and then he's needing to walk because his legs don't have the stamina," she said. "The neurons in his brain and spinal cord are slowly degrading. As they degrade, he's slowly becoming paralyzed over time."

The Laidlaws partnered with the Blu Genes Foundation, the only registered Canadian charity dedicated to SPG4 research. After Jack was diagnosed, they reached out to experts globally and received encouragement from a researcher at Boston Children's Hospital, who enrolled Jack in a study.

The family is hosting Jack's Gala: Reaching for the Stars next week—their second annual fundraising event to support gene therapy research. Jack's father, Richard Laidlaw, notes that despite the diagnosis, his son remains active. "Jack's happy. He is active, athletic and does well in school. He has lots and lots of friends, and plays with his brothers all the time."

For a family navigating a diagnosis with no current treatment path, the gala represents both hope and action—funding research that could change Jack's future.