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CommonHealth: Living With CLOVES Syndrome

Riley getting ready for her 32nd MRI in April. (Jesse Costa/WBUR)

Riley getting ready for her 32nd MRI in April, 2012. (Jesse Costa/WBUR)

Riley Cerabona lives with a rare disease known as CLOVES Syndrome which, as she puts it, “creates lumps and bumps inside and outside her body.” Only about 100 people have been diagnosed with CLOVES worldwide.

Riley is currently participating in a Children’s Hospital clinical trial for a new medication to treat her disease.

We go beyond the medical tests and treatments to try to understand how Riley’s family, specifically her mother and father, Kristen Davis and Marc Cerabona, cope with their daughter’s condition.

Guests:

  • Kristen Davis, Riley’s mom and executive director of the CLOVES Syndrome Community, a nonprofit created to support and connect those families who are living with CLOVES
  • Carey Goldberg, co-host, WBUR’s CommonHealth

More:


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  • Sarah

    Kristen, I just got done listening to your radio interview.  Glad I was at my desk and not in my car as the tears would have required me to pull over. 
    Your courage and grace overwhelmed me during the interview.  I know your words reached out across many miles offering not only hope, but direction and wisdom to so many listeners, some who desperately needed it.  I can only imagine how difficult it has been over the last few months, reliving past surgeries, sharing fears and disappointments, as well as joys and the incredible beauty of Riley and the rest of you, and letting the world into many aspects of your family’s life.
    I am thankful beyond words for being one of the thousands of people blessed from your graciousness in the sharing of your journey. 

Hosts Meghna Chakrabarti and Anthony Brooks introduce us to newsmakers, big thinkers and artists and bring us stories of relevance to Bostonians here and around the region. Live every weekday at 3.

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