Voices of PKD: Kristen Neary

On May 24, 2002, my husband Keith and I welcomed our first daughter, Helen Grace into the world. She was perfect on the outside and let out a cry after being born. This was a sound we were so relieved to hear. When I was seven months pregnant, we were given the devastating news that Helen was affected with ARPKD and her chance of survival was slim. We found doctors who understood our need for hope and helped us plan for her birth and the necessary medical interventions she would need. Sadly, Helen’s case of ARPKD was very severe and her lungs were not able to fully develop. We shared 34 precious hours with Helen in the NICU where she met many family and friends. In her short life, she taught us so much.

Losing Helen was devastating but we knew we needed to live life to its fullest to honor her. We also decided to have an annual picnic in her memory. We invite friends and family to come to our house and enjoy food and fun and ask them to donate to the PKD Foundation Walk For a Cure. Over the past 14 years we have raised close to $150,000. We hope someday a cure will be found!