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Friday, October 14, 2011

Walk Saturday to Raise Awareness on Life Threatening Disease

A Stratford parent, Daphne Main's, push to raise awareness and help their child. Read the moving letter here.

It was just 2 years ago that John and I learned of this life-threatening disease called Polycystic Kidney Disease and found out that our daughter, Avery was affected. Avery has numerous fluid filled cysts on both her kidneys. It is a hereditary disease, however, John nor I are affected with the disease and the doctors believe it may be a mutation in Avery. There are nearly 6,000 people in the State of CT living with PKD and it has no cure the only treatment is dialysis or a kidney transplant. Every year we take her to her specialists at Yale Pediatric Nephrology to do an ultrasound and blood pressure check. 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. Avery is only 5 years old, she is a big sister to Shea and Jack. She just started kindergarten this year in Stratford. Avery enjoys her gymnastics classes and play dates with friends. She is a normal, loving, caring little girl and we never want to get to the point where she needs hospitalization or worse. We have made it our life's goal to find a cure for this disease before it ever progresses in Avery. We created a team called, Avery's Allies to walk for the PKD Foundations annual walk in Connecticut and raise donations. In the two years our team has walked Avery's Allies has raised over $17,000.00 for the PKD Foundation.

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

The walk is Saturday October 15, 2011 at Hubbard Park in Meriden at 11am. Those interested in donating can do so on the Avery's Allies sponsor page: and to follow Avery's progress on her Facebook page, Avery's Allies.


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