Walking to Find a Cure for PKD

Two years ago, parents Daphne Main and John Toth learned their 3-year-old daughter Avery had a degenerative disease of the kidneys called polycystic kidney disease (PKD). 

Since then, every trip the Stratford family takes to Avery's specialists at Yale Pediatric Nephrology is a nervous one packed with fear that the cysts have increased in number on the now 5-year-old girl's kidneys. 

"We go to these appointments holding our breath that the cysts haven't taken over too much good, working tissue of the kidney so as to lead to her need for dialysis," said Main.

PKD is a hereditary disease, although both Main and Toth are not infected with it. Main said Avery's doctors think it may be a mutation in her daughter, who has numerous fluid-filled cysts on both her kidneys.

Although medical treatment may provide relief of symptoms for many years, the disease gets worse slowly, eventually resulting in end-stage kidney failure, according to the US National Library of Medicine.

Main said her daughter will eventually need a kidney transplant.

To help her daughter and fundraise to help find a cure for a disease that affects nearly 6,000 Connecticut residents, Main took part in the PKD Foundation's annual Walk for PKD in 2009 and in 2010, raising more than $17,000 under the team name Avery's Allies.

"My goal is to make the community aware of this not-so-talked-about life-threatening disease," she said. "With this awareness, I hope it will generate enough fundraising dollars for the research needed to find the cure for PKD."

This year's walk is scheduled for Saturday, Oct. 15, at Hubbard Park in Meriden at 11 a.m.

Avery just started kindergarten this year at Chapel Street School, said her mother. Avery enjoys gymnastics and is the big sister to sister Shea and baby brother Jack.

"She is a normal, loving, caring little girl and we never want to get to the point where she needs hospitalization or worse," Main said. "We have made it our life's goal to find a cure for this disease before it ever progresses in Avery."

Those interested in making a donation can do so on Avery's Allies sponsor page by clicking here.

For more information about participating in the walk, contact Daphne Main by phone at 203.507.4114 or via email at ctdaphne@yahoo.com.