This is a special CommonHealth/WBUR series, “The Life of Riley: A Rare Girl, A Rare Disease.” It’s the story of a remarkable 9-year-old girl born with a one-in-a-million disease that creates increasingly aggressive “lumps and bumps” on and in her body. The only treatment, so far, has been surgery. But right now, at Children’s Hospital Boston, Riley is trying an experimental drug that may — or may not — help her.

In the coming weeks, we’ll get to know Riley and her family. We’ll also meet her medical team, who will guide us through the ongoing research into diagnosis and treatment of a disease like Riley’s. And we’ll find out whether she can continue with her drug trial, or if her latest symptoms will disqualify her.

Life Of Riley: On Into The Unknown For Rare Girl With Rare Disease

December 28, 2012, 12:14 PM

Riley Cerabona, who has a one-in-a-million disease, finishes a year-long clinical trial and looks ahead.
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Faces Of CLOVES: Children With 1-In-A-Million Disease Gather

May 31, 2012, 6:40 AM

Last weekend at Boston Children’s Hospital, more patients with CLOVES gathered in one room than ever before.
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Researchers Find Gene For 9-Year-Old Girl’s 1-In-A-Million Disease

May 31, 2012, 6:40 AM

At dinner the other night, Riley Cerabona’s parents tried to explain the very good news that would be officially announced by Boston Children’s Hospital today: Researchers have discovered the gene mutation that causes CLOVES syndrome, Riley’s exceedingly rare disease.
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Life Of Riley: Resilience Lessons From The Masters

May 11, 2012, 6:40 AM

How do they do it? How do they bear the fear and anxiety? How do they suffer the sleep deprivation of getting up at night to help Riley with her breathing machine or her blood sugar? How do they divide the unforgiving labor? How do they keep a family — endlessly demanding even under ideal circumstances — afloat and even frequently laughing through one medical crisis after another?
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‘The Life Of Riley’: Sharing Some Of Her Joys, Cats And Chickens

May 4, 2012, 6:00 AM

Riley shares some of her joys and interests, and discusses how she responds when people ask her about her disease, CLOVES Syndrome.
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Choosing To Try Though Nothing Else Has Worked

April 27, 2012, 6:00 AM

For 9-year-old Riley, it was a big decision to sign up for a clinical trial of an experimental drug, but there is reason to hope.
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A Peculiar Pattern, An Aha Moment And A Lifesaving Diagnosis

April 20, 2012, 6:00 AM

This week, we receive the results of Riley’s MRI and explore the genesis of CLOVES, Riley’s disease, and how one doctor’s obsessive talent for pattern recognition ended up helping her and many others.
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Here Comes My 32nd MRI

April 13, 2012, 2:00 PM

In Part 2, Nine-year-old Riley Cerabona goes in for a crucial MRI that will determine whether she can keep taking an experimental drug for her rare disease.
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A Rare Girl Battles A Rare Disease

April 06, 2012, 7:55 AM

Will an experimental drug help Riley Cerabona, a 9-year-old girl with a one-in-a-million disease?

In Part 1, we meet Riley and her family, and learn the medical backstory.
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Notes: For more than five years, WBUR’s Jesse Costa has known and admired the Cerabona family and thought that he should chronicle their struggles and joys.

The Cerabonas helped found the CLOVES Syndrome Community, a nonprofit organization for CLOVES patients and their families, and work to help increase public awareness of the syndrome.


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