Claire was born with Autosomal Recessive Polycystic Kidney Disease and Congenital Hepatic Fibrosis (ARPKD/CHF), underdeveloped lungs, a hole in her heart, and a cleft lip and palate. Doctors said she wouldn’t survive. Nineteen years later, she is still here. Over the years, her lungs grew stronger and the hole in her heart closed. Her kidneys continued to fail with hundreds of cysts growing, and at nine years old she received a lifesaving kidney transplant. She grew up going to doctors’ appointments instead of the park and camping out in the ER instead of in her backyard. However, she wouldn’t change it for the world. It’s made her who she is. Instead of harboring anger, she has learned to tell her story. As a Rare Storyteller for Harmony 4 Hope, she advocates for others like her by talking to medical professionals and students about recognizing the effects of rare disease on individuals and their families. Claire also meets with legislators to advocate for the healthcare needs of children, and hopes to inspire others to not let their suffering define their personhood.

In addition to being a Rare Storyteller, Claire also writes a regular column for Harmony 4 Hope called Claire 4 Rare, featuring people with rare diseases and sharing their stories with you. She hopes to bring positivity and inspiration into your lives through her words and through these stories of pain, suffering, resilience, and ultimately, triumph.