Introducing Claire 4 Rare – A Harmony 4 Hope Publication

Hello everyone! My name is Claire Bevec and I’m so excited to announce my monthly column that I will be writing for Harmony 4 Hope. I am so thankful for this opportunity to share some of the most beautiful stories about life with a rare disease. Each month I will feature someone with a rare disease and share their story with you. I hope to bring positivity and inspiration into your lives through my words and through these stories of pain, suffering, resilience, and ultimately, triumph. Get ready to meet so many amazing and strong men, women, and children along the way. I can’t wait! I myself am living with a rare disease and I’m happy to share my experience with you as our very first Claire 4 Rare column. I hope you enjoy it!

My Story 

I was born with Autosomal Recessive Polycystic Kidney Disease and Congenital Hepatic Fibrosis (ARPKD/CHF), underdeveloped lungs, a hole in my heart, and a cleft lip and palate. Doctors said I wouldn’t survive. Nineteen years later, I’m still here. Over the years, my lungs grew stronger and the hole in my heart closed. My kidneys continued to fail with hundreds of cysts growing, and at nine years old I received a lifesaving kidney transplant. I’ve had 13 facial reconstructive surgeries for my cleft lip and palate, around 30 in all because of other underlying health issues, and three near-death experiences as a result of sepsis. I grew up going to doctors’ appointments instead of the park and camping out in the ER instead of in my backyard. However, I wouldn’t change it for the world. It’s made me who I am. There were many days where I could’ve sat feeling sorry for myself, but I chose to take my suffering and turn it into good. It’s like having a superpower, using it for good or evil. Though evil can seem like the easier option, good is the most rewarding. Instead of harboring anger, I’ve learned to tell my story. As a Rare Storyteller for Harmony 4 Hope, I advocate for others like me by talking to medical professionals and students about recognizing the effects of rare disease on individuals and their families. I meet with legislators to advocate for the healthcare needs of children, and hope to inspire others to not let their suffering define their personhood.

Get To Know Me! 

– I’m currently a sophomore at Carthage College in Kenosha, Wisconsin. – I am studying communications and creative writing.

– My dream is to be a screenwriter and to inspire and spread positivity and resilience through film.

– I love animals and I have an Australian Shepherd named Daisy and two horses named Oscar and Abby.

– Despite everything I’ve been through, I love the hospital. It’s a second home and it makes me really happy more than it makes me sad.

– I’m a huge movie buff and kind of nerd when it comes to Marvel and Star Wars.

What Does “Rare” Mean to Me? 

To me, rare is more than just a word. Rare is beautiful, strong, courageous, and resilient. Who longs to be normal? Is there even a normal? I don’t believe so. The most beautiful part of anything is the uniqueness and the differences. Rare is exciting and unpredictable. There are entire cultures that hold the rare and the unique to higher standards. They look up to them and aspire to be like them. Rare is something highly sought after. Rare is something to be proud of and something to show off. Rare is something to be celebrated.

If you are living with a rare disease or know someone who is, please contact me at [email protected]. I would be honored to share their story here! If you don’t feel ready to do so, that’s ok too. I would be so happy to just meet and chat with you. I understand sometimes it’s hard to find someone to talk to who also knows what living with rare disease is really like. We’re rare, but we’re there!