Member Stories - Cloves Syndrome Community

We have a rapidly growing community of people with CLOVES and a network of supporters who want to learn more. Awareness leads to action and to understanding more about the disease and the unique needs of our community. We are thankful to the people with CLOVES who have shared their stories with us.

Meet Vincho

My name is Vicente, but you can call me Vincho. I’m from Buenos Aires, Argentina. I was born in September 2023. My parents found out I had CLOVES when my mom was about 35 weeks pregnant but the diagnosis was…

Meet Gabi

Hello! I’m Gabi from Brasil and I’m 23 years old. My parents didn’t get the diagnostic at birth, it was only after a couple of months that they found a doctor, who told them I had PROTEUS. Now as an…

Meet Evan

Baseball is Evans’s outlet in everyday life. His teammates are supportive and encouraging. We are thankful he is healthy enough to play and keep up with his teammates.

Meet Melody

As far as I’ve been told, I’ve had CLOVES pretty much ever since the day I was born. I’ve always felt physically different compared to others around me for my entire childhood, even to this day as a rising college…

Meet Rad

We found out our baby boy had CLOVES Syndrome when I was 7 months pregnant with him. We were fearful of the unknown but Rad came out happy, calm, and full of strength. He is the happiest baby and we…