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

A child with CLOVES resting in the kids room after recently having surgery. (Jesse Costa/WBUR)Riley meets Dr Denise Adams of Cincinnati Children's Hospital. (Jesse Costa/WBUR)Attendees checking into the CLOVES Conference at Children's Hospital Boston. (Jesse Costa/WBUR)An attendee of the conference with her child who has CLOVES. (Jesse Costa/WBUR)2-and-a-half year old with CLOVES and her mom (Jesse Costa/WBUR)Playing in the kids room. (Jesse Costa/WBUR)Riley and her friend Adri playing games in the kids room. (Jesse Costa/WBUR)Kristen Davis kicks things off by saying a few words to introduce the 2nd Annual CLOVES Conference. (Jesse Costa/WBUR)Kyle Kurek explains the Pik3ca mutation in a way that families can understand. (Jesse Costa/WBUR)Orthopedic surgeon Samantha Spencer watches the presentation by Matthew Warman and Kyle Kurek. (Jesse Costa/WBUR)A grandparent of a child with CLOVES asks questions. (Jesse Costa/WBUR)The Q+A panel, Samantha Spencer, Ahmad Alomari, Steven Fishman, Cameron Trenor, and Denise Adams field questions from the CLOVES Community members. (Jesse Costa/WBUR)Ahmad Alomari (l) and Cameron Trenor (r) react as Steven Fishman answers a question. (Jesse Costa/WBUR)The CLOVES Community asking questions. (Jesse Costa/WBUR)Dr. Matthew Warman talks with a teen with CLOVES during a break in the conference. (Jesse Costa/WBUR)Dr. Denise Adams of Cincinnati Children's Hospital speaking with the geneticists Dr. Matthew Warman and Kyle Kurek. (Jesse Costa/WBUR)Running after bubbles in the kids play room. (Jesse Costa/WBUR)Volunteer Jan Cerabona shows Ryan the Garden and birds out the window - kids loved going for walks in the garden during the day. (Jesse Costa/WBUR)New, lifelong, friends were made, lots of laughter and fun, parents are already looking forward to next year. (Jesse Costa/WBUR)Volunteer Ann-Marie Costa with Ryan, a child with CLOVES, Walking in the Prouty Garden at Boston Children's Hospital. (Jesse Costa/WBUR)

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.” There was also a sense that “we’re on the cutting edge of knowledge,” she said. The gene mutation for CLOVES was just discovered in May, and researchers at the conference spoke about the mouse model that can now be developed to deepen understanding of the disease and possible treatments.

Also, Dr. Cameron Trenor of Children’s discussed the launch of a new registry for patients with CLOVES and similar diseases, Kristen said, “so in 20 years we can see what happens if you intervene at age 2 instead of age 20, how did that impact their lives?”

What was most amazing, though, she said, was to see children with such an exceedingly rare disease all together for the first time. “There are 100 people in the world identified with this, and 13 of those people all in the shared space. They see people with the same lumps and bumps that they have. There was a comparison of scars. For me, that was really amazing. I was so glad to meet other people, and there were parents saying, ‘I’m so glad we’re not the only people dealing with this.'”

Oh, yes, one other bit of nice news: Riley just entered the double digits. Kristen writes: “So very thankful to be celebrating her tenth birthday. ♥ ♥”

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