The Life Of Riley: A Rare Girl, A Rare Disease

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

Riley Cerabona, who has a one-in-a-million disease, finishes a year-long clinical trial and looks ahead into the unknown.

Faces Of CLOVES: Children With 1-In-A-Million Disease Gather

An update for the WBUR Life of Riley series about a Maine girl with a 1 in a million disease: The first formal CLOVES conference, and Riley is doing well.

Researchers Find Gene For 9-Year-Old Girl’s 1-In-A-Million Disease

Boston Children’s Hospital researchers find the gene that causes CLOVES Syndrome, Riley’s rare disease.

Life Of Riley: How Do They Do It? Coping Lessons From The Masters

In the final installment of “The Life of Riley,” Riley’s parents talk about how they cope.

‘The Life Of Riley’: Sharing Some Of Her Joys, Cats And Chickens

Nine-year-old Riley Cerabona, who has the rare disease CLOVES Syndrome, shares some of her joys and challenges.

Life Of Riley: Choosing To Try Though Nothing Else Has Worked

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.

Life Of Riley: A Peculiar Pattern, An Aha Moment And A Lifesaving Label

How CLOVES, RIley’s rare disease, was first identified.

Life Of Riley: Here Comes My 32nd MRI

9-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.

Life of Riley: Rare Girl Battles A Rare Disease

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

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