“I always just try to keep moving forward. It’s the best thing you can do.”
Ellena was born with CLOVES Syndrome, a condition so rare that only around 300 people in the world share it. She had brain surgery at six weeks old. She grew up with a prosthetic foot she calls her “super foot.” And for most of her childhood, she felt like the only one.
Then she came to Roundup River Ranch, the SeriousFun camp in Colorado. Watch her share her experience in her own words.
Ellena is a senior in high school living with CLOVE Syndrome, a condition that only around 300 people in the world share. This is her story.
Today, Ellena is a senior in high school and, by her own description, “pretty typical in all the teenager ways.” She is extroverted and giggly, proud of how far she has come, and clear-eyed about her own resilience. “I do pretty well, considering how much I’ve been through,” she says. “I could choose to be a Debbie Downer, but I choose not to. I’m proud of myself.”
That is not a small thing for a kid who grew up feeling like the only child living with a rare disease. It is the whole thing.
And that is what happens when a child living with a rare condition finds a place that sees them for who they are, not their diagnosis.
Camp changes everything.