The mother of a Calgary girl suffering from a rare kidney disease is on a mission to raise awareness about the condition.

Sophia Galbraith now

Six-year-old Sophia Galbraith at home with her family in Calgary. (CBC)

Andrea Galbraith's six-year-old daughter Sophia was diagnosed with focal segmental glomerulosclerosis (FSGS) four years ago. The disease causes scarring on the kidneys, damaging the tiny filters that keep important proteins in the body and get rid of waste. Galbraith says it has a huge impact on her daughter's life.

"She gets really, really sick," Galbraith said. "She just can't do all the normal things that a healthy child would do and we worry about her future."

FSGS is the leading cause of kidney failure in children.

So far, Sophia has been hospitalized 40 times since she was diagnosed and is vulnerable to infection. She takes powerful drugs and has to undergo weekly tests. 

"FSGS is a difficult disease and quite often, children with FSGS will have a decrease in kidney function to the point where they need dialysis and a kidney transplant," said Dr. Julian Midgley, chief of pediatric nephrology at the Alberta Children's Hospital. "Whether that's 10, 15, 20-years-old is a bit difficult to say."

Disease can attack transplants

Sophia Galbraith FSGS

Sophia Galbraith has been hospitalized 40 times since being diagnosed with FSGS four years ago. (Submitted by the Galbraith family)

However, even a kidney transplant won't bring the guarantee of better health for children with FSGS.

The disease can attack a transplanted kidney, sometimes within hours of surgery.

But despite its devastating effects, FSGS has a very low profile in Canada and the U.S.

There are only a couple thousand new cases diagnosed in Canada every year and, although it is rare, it's technically more common than cystic fibrosis — just less well known.

Fundraiser planned for Calgary

To try and change that, Galbraith is planning a fundraiser in Calgary on March 8 at the Silver Springs Golf Club.

The money raised will go to the NephCure Foundation and will stay in Canada to fund research and education programs around kidney disease and FSGS. 

The NephCure Foundation and the Kidney Foundation of Canada will match monies raised up to $50,000.

Since Sophia was diagnosed four years ago, Galbraith has raised $150,000 for research and says she hopes that is just the beginning in the mission to find a cure for the disease.

"I just want to be able to raise awareness," Galbraith said. "I want people to be able to know what it is. I want people to know that kidney disease is a terrible thing for people to live through."