December 13, 2021

Give the Gift of Hope

With 2021 drawing to a close, we hope you remember the PKD Foundation of Canada in your holiday plans and consider making a year-end gift to help advance Canadian research, advocacy and support for more PKD patients and their loved ones.

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Your Gift This Holiday Season Will Give Hope to Those Affected by PKD like the Vardzel-Bisaillon Family!

Like all parents, we had dreams and aspirations for our unborn baby. But as we sat in the doctor’s office learning about the ARPKD diagnosis, we broke down into tears, thinking this is no way for a child to start her life. This was not part of the plan. When Abbey arrived, she came into the world eyes wide open with a tenacious spirit ready to fight. ARPKD took us on a roller coaster ride, but we always remained optimistic for the future as we set goals to take her home. We were hopeful that a cure would one day be found. Unfortunately, PKD had other plans as the cysts on her kidneys continued to grow, leaving little room for anything else, especially her lungs. Abbey spent her short life in the hospital and won the hearts of everyone she met as she grew a reputation for defying her doctors. After two months of fighting for her life, her little body could no longer take the brutality of ARPKD, and she passed peacefully in our arms.

The grief journey is and continues to be the hardest thing we have ever gone through, as there will always be an Abbey size hole in our hearts. In the early days after we lost Abbey, we went into survival mode as our arms ached for our baby girl. We felt like we lost our purpose, and it became a very isolating experience. It was when we were at our lowest that we learned the importance of community. We reached out to the PKD Foundation of Canada, and they welcomed us with open arms. We found a like-minded group that let us share our story and be a shoulder to cry on - a group that shared our heartache when it came to PKD.

With time there came this innate desire to make something good out of something bad. A desire to preserve the memory of Abbey and to create awareness. Every bereaved parent’s main fear is their child being erased from history, being forgotten. Motivated to make a difference, we dedicated ourselves to the Foundation as volunteers and created Abbey’s Flock. Starting out as our team walk name, Abbey’s Flock grew into an embodiment for Abbey’s legacy. Using the Flamingo as a symbol for hope, Abbey’s Flock now raises money for desperately needed research and creates awareness for ARPKD and infant loss. At the hospital, Abbey’s flamingo blanket was a unanimous favourite with family and staff.

"As parents to a PKD angel, we have the desire to see loved ones no longer suffer, the desire for better treatments and the desire for a cure."

We share our story, because we don’t want any other parent to have to go through what we went through. PKD will always be part of our family. There will always be a 1 in 4 chance another child could be born with ARPKD, and future generations will continue to be carriers of this aggressive disease. Last year we were blessed to give Abbey a little sister, Ellie, as we defied these odds, but not all families are as fortunate.

We hope through research the narrative will change. The future we envision includes babies not only surviving, but thriving with ARPKD. So, siblings like Ellie and Abbey get to grow up together. Parents get to see these children graduate and start families of their own, without the hardship and obstacles of PKD. We hope to see families take advantage of peer-to-peer support and educational events, to know they are not alone, but have a whole community behind them. PKD is what took our daughter, but it didn’t define her. Together as a community we believe we can make a difference. So, let’s Flock together and end PKD.

- Stephanie Vardzel

The mission of the PKD Foundation of Canada is to strengthen national programs of research, advocacy, education, support and awareness in order to discover treatment options that will improve the lives of the 66,000 Canadians and 12.5 million people globally affected by this disease. Our vision is that no one suffer the full effects of PKD.

Your support - no matter the size - helps to strengthen these front-line initiatives, helps support families like the Vardzel-Bisaillons, and will also allow us to continue being a national leader of clinical research and fellowship funding in the field of ARPKD and ADPKD.

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With our collective efforts, we will keep moving closer to discovering new life-saving treatments for ARPKD and ADPKD. 

From all of us at the PKD Foundation of Canada, we wish you and your loved ones a safe and Happy New Year! 

Your Friends at the PKD Foundation of Canada