Provide names of other journalists involved.
Jesse Costa
List date(s) this work was published or aired.
A series of posts ran between April 6 and Dec 28, 2012.
Provide a brief synopsis of the story or stories, including any significant findings.
Riley Cerabona is a rare girl with a rare disease. She has an incurable, one-in-a-million syndrome that creates increasingly aggressive lumps and bumps” on and in her body. So far, the only treatment for her disease, CLOVES syndrome, has been surgery. But this year, at Boston Children’s Hospital, Riley began taking an experimental drug in hopes that it would help her. Rare diseases are not really so rare. Each individual disease is rare, of course, but overall, an estimated 7,000 rare diseases affect 30 million Americans. This multi-media series puts a compelling “face” on rare disease; it combines the human element with the fascinating scientific side of rare diseases research in an unusually affecting and informative mix. It compels the reader/viewer by focusing on a lovely girl and her admirable family, and expands outward to the researchers who came up with her diagnosis and, in the course of the series year, pinpointed the gene at work. It also explored the issue of how families cope with a “medically complex” child, and how people with serious diseases can nonetheless live rich and full lives.”
Explain types of documents, data or Internet resources used. Were FOI or public records act requests required? How did this affect the work?
Extensive original reporting.
Explain types of human sources used.
The family, the doctors, the researchers
Results:
Overwhelming response from readers in support of the family.
Follow-up (if any). Have you run a correction or clarification on the report or has anyone come forward to challenge its accuracy? If so, please explain.
No.
Advice to other journalists planning a similar story or project.
The key to this series was a strong relationship with the family. That involved continued negotiation about our coverage, but we kept in mind that what, to us, is one story out of many is, to them, their life and their beloved child.