An Ontario mother is calling on the federal government to provide funding for clinical trials aimed at curing the rare, genetic disease that doctors say could claim her son’s life by the age of four.

Kristen Sturgeon and her family stood for hours on the steps of Parliament Hill waving homemade signs and chanting slogans in the rain on Thursday. The group assembled there in the hopes that Canada’s health minister would take note.

Sturgeon’s two-and-a-half-year old son, Kaiden Sturgeon-Harper, was born with a rare genetic disease called Sandhoff disease, which progressively destroys nerve cells in the brain and spinal cord. There is no cure for the disease and the average life expectancy for children is four years old.

“It’s really hard to talk about it,” Sturgeon told CTV Ottawa on Thursday. “It’s really devastating. I wake up every day and it’s a constant battle fighting for his life and I should have to do this when there’s a cure on the horizon.”

That potential cure is still in its experimental stage in a lab in Kingston, Ont. Dr. Jagdeep Walia, a geneticist at the Kingston Health Sciences Centre who is working on the treatment, says he’s had success in mice and he’s hoping to raise enough funds to advance to human clinical trials.

“The hope is that we are going to treat them with one injection, one time in their life and the disease will be cured,” Dr. Walia said in a phone interview. “The earlier we give the injection the better.”

As promising as that sounds, there’s a problem. And a costly one at that.

The clinical trials will cost $1 million for each child. That is why the Sturgeon family travelled from their home in Brockville, Ont. to Ottawa to ask the government to provide funding for the human clinical.

“We’re really hoping to get some approval to go forward with it and not wait for more testing to be done,” Mike Sturgeon, Kaiden’s grandfather, said.

Health Canada addressed the matter in an emailed statement.

“Clinical trials can be conducted for a single patient or a group. A patient’s doctor can apply to conduct a clinical trial by submitting an application to Health Canada. To date, Health Canada has not received a clinical trial application for this treatment.”

Dr. Walia says his team has submitted a pre-clinical trial application with Health Canada and will submit full clinical trial applications once they’ve completed more studies.

But Sturgeon says, for her young son, time is running out.

With a report from CTV Ottawa’s Joanne Schnurr