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.
Riley Cerabona, who has a one-in-a-million disease, finishes a year-long clinical trial and looks ahead into the unknown.
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.
Boston Children’s Hospital researchers find the gene that causes CLOVES Syndrome, Riley’s rare disease.
In the final installment of “The Life of Riley,” Riley’s parents talk about how they cope.
Nine-year-old Riley Cerabona, who has the rare disease CLOVES Syndrome, shares some of her joys and challenges.
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.
How CLOVES, RIley’s rare disease, was first identified.
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.
Will an experimental drug help Riley Cerabona, a nine-year-old girl with a one-in-a-million disease?