A Brockville mother is in a desperate race to save her child's life. Kaiden Sturgeon-Harper has a rare and deadly genetic disease with a life expectancy of 4. Kaiden is 2 and a half.

He suffers from something called Sandhoff Disease.  There is no cure but research is underway in a Kingston lab that is giving promising results.  For Kaiden's mom, that's all she's got.

You'd have to be pretty desperate to stand out for hours in the cold on Parliament Hill with an ill baby. 

“Hey I love you buddy, we are fighting for you,” Kristen Sturgeon whispers to her baby, “We are fighting so hard for you buddy.”

Desperate is just what Kristen Sturgeon is.  Kaiden suffers from a rare genetic disorder called Sandhoff disease that causes nerve degeneration and death by the time these children turn 4.

“It's really hard to talk about on camera, but it's really devastating,” she says as she starts to cry, “I wake up every day and it's a constant battle fighting for his life and I shouldn't have to do this when there's a cure on the horizon.”

That cure is a lifeline and an expensive one at that, a treatment still in the experimental stage.  But the Kingston geneticist working on it, Dr. Jagdeep Walia, has had success in mice and is hoping to raise funds to move into 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,” says Dr. Walia, Geneticist at Kingston Health Sciences Centre and Assistant Professor of Pediatrics and Genetics at Queen's University, “The earlier we give the injection the better.  So if these children are diagnosed as newborns, we can correct it before any brain deficits arise.”

But that treatment will be costly: one million dollars per child. 

And so, Kaiden's family is here, on Parliament Hill, hoping to convince Canada's Health Minister to help fund the clinical trials. 

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

Kristen Sturgeon knows how crazy it sounds.

“Every child that needs this cure needs a million dollars?  It's not fair.”

But the alternative for Kaiden?

“He’s going to die,” she says as she hugs him to her chest.

In a statement, Health Canada said, “Health Canada recognizes the importance of patients having access to drugs and treatments that may help treat their serious or life-threatening conditions.  In the case where there is no approved treatment for a condition, clinical trials present the best route for a patient to access a treatment. Clinical trials provide oversight and patient protection, and allow researchers to gather information on the therapy for future use. 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 clinical trial application as pre-clinical trial application with Health Canada and that they are doing more studies to submit more full clinical trial applications.