Riley has CLOVES syndrome, a rare and progressive overgrowth disorder. First identified in 2007, the disease has been found in only 100 people in the world, has limited treatment options, and no cure. Those living with the disease are born with it and experience overgrown areas of their bodies, vascular malformations, spinal anomalies, skin abnormalities and more.
To help other families with the disease, Riley, her mom, Kristen Davis, and dad, Marc Cerabona, founded the CLOVES Syndrome Community in 2009, a nonprofit organization to help provide support and educate about the disease.
“It is a rare disease. That doesn’t mean that people who don’t have it shouldn’t care about it,” Kristen Davis said. “If people can connect around this illness and have education around it and support around it then they can really parent their kids to the best of their abilities.”
The group uses social media to reach families affected by the disease, hosts a yearly conference, and has a medical advisory board that helps navigate the medical aspects of the syndrome, providing resources and more.
“One of the things about having a rare disease, at least for a parent of a child with a rare disease, it’s hugely isolating,” Davis said. “There’s a loneliness piece, like no one else is going through the same thing. So finding other people who have gone through the same thing is really empowering.”
Riley, a student at Sea Road School, has undergone 16 surgeries — her first at 3 months old — with procedures ranging from removing vascular anomalies, to removing lipomatous or fatty masses, to surgeries on her spinal cord to correct spinal lesions. Surgeries have caused paralysis in Riley’s left arm, left her learning how to walk again, and after one procedure left her neck weak — she had titanium put in her neck and was forced to wear a halo.
She takes a variety of medications to regulate pain, and most recently started a clinical trial of sirolimus for complex vascular anomalies. Though Riley said the medicine “tastes like moldy peanut butter,” it could help reduce the amount of surgery she’ll need in the future, hopefully enabling the disease to be treated with medication instead.
“It does make life more challenging, but also I still get along like all the rest of the kids in my class,” Riley said of living with CLOVES, adding that she fills her peers in on the disease at the beginning of each school year.
While Riley said she’s not treated any differently, living with CLOVES can be a difficult burden to carry, for her and her family. Sometimes, Riley said, she wishes she could be normal and uses acting as an outlet.
“That’s the reason I like acting is so that I can be someone else and get away from it for a while,” said Riley, who has acted in productions at school and through River Tree Arts.
When she’s an adult, Riley — who has three cats, one dog and loves animals — sees herself as a singer or a veterinarian.
“You could be a singing vet,” Davis said.
It’s humor that the family relies on through such ups and downs in Riley’s journey. Her older brother Cole, 12, said, “Humor keeps us from cracking like a piece of ice in a fire.”
It’s also important that they stay close. Though Cole said his little sister tends to get more attention from their parents, simply due to the needs that having CLOVES presents, he understands.
“We’ve done a lot of talking over the years about how it’s hard on each of them and that’s part of life and we’re not going to hold on to that and be mad at the other person,” Davis said. “It’s hard. It’s hard for Riley, it’s hard for Cole, it’s hard for mom and dad, it’s hard for the people who love us. But we have to stick together.”
How To Help
What: Kennebunk Cares for Kids with Cloves
When: From 4:30 to 7:30 p.m. Wednesday, June 20
Where: Seafood Center Restaurant and Arundel Ice Cream Shop, Route 1, Arundel
Why: Come out, enjoy a meal, have fun and help a local cause. Ten percent of sales from the evening will benefit the CLOVES Syndrome Community, an organization that supports, educates, empowers and improves the lives of those affected by CLOVES syndrome.
For more information on CLOVES syndrome, visit www.clovessyndrome.org.