Jack Laidlaw, a nine-year-old boy from Ottawa, dreams of becoming the first person to walk on Mars. However, his journey is challenged by a rare genetic disease known as Hereditary Spastic Paraplegia Type 4 (SPG4), which affects less than 0.01 percent of the population.
Diagnosis and Family Response
Diagnosed in 2023, Jack's condition causes progressive degeneration of upper motor neurons in the brain and spinal cord, leading to muscle weakness and stiffness in the legs. His father, Richard Laidlaw, describes Jack as happy, active, and athletic, with many friends and a love for sports. But the disease makes it hard for him to keep up with his younger brothers. "He will run for about 10 seconds, and then he’s needing to walk because his legs don’t have the stamina," says his mother, Anna Laidlaw.
Currently, there is no cure or treatment for SPG4. The Laidlaws partnered with the Blu Genes Foundation, a registered Canadian charity, to raise funds for gene therapy research. They are the only family in Canada involved with this charity for SPG4.
Community Fundraising Efforts
Next week, the family will host their second annual fundraising event, Jack's Gala: Reaching for the Stars. The event aims to support research at the University of Massachusetts Chan Medical School, where a gene therapy project for SPG4 has been initiated. After Jack's diagnosis, the Laidlaws contacted experts worldwide and received crucial support from a researcher at Boston Children's Hospital, who enrolled Jack in a study of SPG4 patients.
Anna Laidlaw emphasizes that Jack understands his condition only as a "silly gene that makes his legs tired," sparing him the full weight of the disease's progression. Bright and empathetic, Jack enjoys hockey, spending time with family, and dreams of becoming an astronaut. "You have gravity in the world and you don’t have gravity in space. I want to be able to feel what it feels like," he says.
The family hopes their story will inspire others and accelerate research to find a cure for SPG4.
