Linda and Claire Bevec are a mother-daughter storytelling duo with a powerful message on both raising a child with a rare disease and growing up with a rare disease. Claire was born with Auto Recessive Polycystic Kidney Disease and Congenital Hepatic Fibrosis (ARPKD/CHF) which occurs in 1:20,000. Half of all babies with ARPKD/CHF do not survive the newborn period, and those who do survive face a lifetime of kidney and liver disease complications resulting in organ transplantation as well as heart, bone and growth issues. Claire has had over 23 surgeries in 17 years. She is a junior in high school who loves theater/acting, singing, Broadway musicals and her horse Oscar.

“Harmony 4 Hope is a reflection of my own heart. I absolutely LOVE Rare Storytellers because I've always been a believer in the power of a story...the pouring out into words, the crafting of an experience so personal and painful and yet so healing for the storyteller and how this story can become an instrument of inspiration and change for those who hear it. I am compelled to always tell her/our story and I'm so proud of Claire for now feeling brave enough to tell it in her own words.”