BC Family Raises $2.6M for Son's Gene Therapy Treatment

A sticky note from a five-year-old girl just sparked a cross-country journey that could change how Canada treats rare diseases.

Stalinjeet and Navpreet Gill of British Columbia were devastated when their son Gurmoh, now three, was diagnosed with Spastic Paraplegia, a rare disease causing mobility and speech problems. But just hours after the diagnosis, they discovered something that gave them hope: McGill University was already working on a cure.

Dr. Zin Gan-Or told them gene therapy could treat Gurmoh's condition, but it would cost $8 million to research, test, and develop. The treatment would modify Gurmoh's genes to correct the disease at its source.

The couple jumped into action. They organized rallies across British Columbia, launched GoFundMe campaigns, and held fundraisers that have collected more than $2.6 million so far.

Then Gurmoh's five-year-old sister changed everything. She wrote on a sticky note: "Mom, Gurmoh needs help. Please help our Gurmoh." She asked her mother to put it at the highest point in the world where everybody could see it.

That innocent request inspired what the Gills are calling a "journey of hope." Starting in Vancouver last Saturday, they're traveling across Canada collecting thousands of letters from families affected by rare diseases. They stopped in Regina on Tuesday evening and plan to deliver every letter to the Prime Minister's Office on August 11.

The campaign isn't just about Gurmoh anymore. The Gills learned that 3.2 million Canadians live with rare diseases, far more common than most people realize.

The Ripple Effect

The letters ask the Canadian government to invest more in treatments for rare diseases. Stalinjeet argues it's not just compassionate—it's practical. "Invest in health, saving these people so they become working citizens who would help Canada grow rather than becoming dependent on the system," he explained.

Once they reach the full $8 million, the year-long development process will begin. Scientists will genetically engineer the therapy, test it on animals with the same disease, and have the treatment ready by next summer.

The Gills are already hearing from families across the country who feel less alone. Their campaign is showing Canadians that rare diseases affect millions and that treatments exist if we choose to fund them.

Gurmoh dreams of becoming a firefighter one day. His father believes that with gene therapy, that dream could become reality. "He's a very happy kid; he's loving, and we hope he can do something he loves one day."