Why I Walk…

As many of you may already know, I walk for my three year old, Chalese. She was born with ARPKD - Autosomal Recessive Polycystic Kidney Disease. Before she was born I had never heard of it as I'm sure many of you haven't either. This is a rare genetic disease that affects her kidneys and will ultimately lead to the need for a kidney transplant. This genetic disease is fairly complicated in that those affected have cysts in their kidneys, high blood pressure, scarring on the liver (CHF), an enlarged spleen, poor growth, medication every day for the rest of her life, frequent doctor visits, the need for extra water and concern for dehydration..on and on. This is a life long chronic illness but Chalese is doing surprisingly well at this time and her doctors are amazed! She currently has excellent kidney function, controlled high blood pressure and a slightly enlarged spleen & liver scarring.

The PKD Foundation is not only a place for parents, patients and families to find tremendous support and information but it also provides education, advocacy and funding toward necessary research. I have been the co-coordinator for the Utah Chapter for the past few years and I am grateful for the strength that the Foundation has given me. I have met some amazing people and feel like I am doing all I can to help my baby girl. I want what every mother wants, for her kids to grow up and enjoy a 'normal' life. I pray that Chalese will be able to grow up along side her big sister Regan and that they will both live happy lives and some day be able have children of their own.

There is no treatment and no cure for ARPKD and roughly 30% of babies born with ARPKD die at birth. The Walk for PKD is so important to raise awareness and much needed funding for research. Please join me by donating to Chalese's Hope today. Any amount, no matter how small is helpful. There is hope.

Thank you for listening to my story and learning about ARPKD.

Saturday, September 19th

Winchester Park Pavilion, Jordan River Parkway

1250 W. 6400 S.

Murray, UT

Registration Opens: 9am

Walk Start: 10am