This spring, WBUR posted a series on Riley Cerabona, a remarkable Maine girl with CLOVES, a disease so rare that only about 100 people in the world have been diagnosed with it. The full series is here.
We promised regular updates but — I can’t remember ever being so happy as a journalist to write this — there’s been very little to report, at least in terms of Riley’s medical condition. Her MRI’s have shown no sign that dangerous new malformations — what she calls “lumps and bumps” — are growing on her spine. Riley’s mother, Kristen Davis, recently wrote on Facebook: “Stable has been strange to get used to, after so much non-stable time, but we are so grateful and loving it!!”
Stable does not mean quiet, however. Last weekend at Boston Children’s Hospital, more patients with CLOVES gathered in one room than ever before: 13 out of the estimated 100. The setting was the first full formal conference on CLOVES, bringing together patients, parents, doctors and researchers to learn from one another and share experiences. WBUR’s Jesse Costa photographed the conference and produced the slideshow above.
Kristen reports a lot of “parents sharing with doctors; doctors sharing with parents; and kids hanging out together. It just felt very collaborative.” Continue reading