Lunapark families meet for the first time ever!
This 4th of July, we traveled to the mountains of West Virginia to finally meet the Huber family in person. After months of texting after their daughter Evelyn’s Lunapark Syndrome diagnosis, we were to excited to meet. Some people thought we were crazy for renting a house with strangers, but from the moment we arrived it felt like coming home to friends we’d somehow always known.
There’s something amazing about sitting with to another family who has walked a path so similar to yours. As we settled in, we began sharing our stories. Those early days when we first noticed something wasn’t quite right. The comments from well-meaning people that our kids would “catch up.” The growing sense that this was something more. The mind-blowing similarities of our girls and what enjoy most like music, splashing in water, and their big sisters.
It wasn’t just our diagnosis that we connected on, it was everything about our girls. The way our Olive and Evelyn move, the way their skin feels and how they like to chew their bibs (and everything else, lol), and laugh with their sisters. They even look alike! And as moms, how we tend to them when they eat, change their diapers and get them dressed.
The Relief of Not Having to Explain
What struck me most powerfully during our time together was the ease I felt. The relief of not having to explain anything. Not having to provide context or backstory or explaining a diagnosis. Not having to see that slightly glazed-over look people get when you dive into the complexities of your child’s condition.
This is something our own families, as much as they love us, don’t really understand. They haven’t lived this life. They haven’t spent nights researching. They haven’t sat in countless therapy sessions or fought with insurance companies or translated medical jargon or navigated IEPs. They support us, yes. They love our girls fiercely, absolutely. But they don’t know it in their bones the way another LNPK parent does.
There’s no judgment in that observation—it’s simply the reality of rare disease life. You can’t truly understand unless you’ve lived it. And that’s what made this mountain trip so extraordinary. For a few precious days, we got to exist in a space where everyone understood. Where we didn’t have to translate our experience. Where we could just… be.
Watching Our Girls Together
Our older daughters became instant besties, with the kind of friendship that picks up as if they’ve known each other forever. Watching them play together, laugh together, just be kids together was such a gift! Brooke has long told us that she doesn’t have anyone who truly understand what it’s like for her. And now, she does! There’s something healing about seeing your typically developing child connect with another kid who also has a sibling with complex needs. These rare siblings share such a unique perspective, boundless empathy amid real grief, too.
Watching Olive and Evelyn spend time together doing all the things they love was so beautiful. They didn’t need to communicate in traditional ways to enjoy each other’s presence. They just existed together, two girls who share something incredibly rare, completely comfortable in each other’s space. They both love to splash in water, loved riding around in Evelyn’s jeep, playing with their musical toys and watching their favorite shows. No judgement, no expectations, they could just be who they are with two sets of parents who get them.
The Gift of Finding Your People
There’s a specific kind of loneliness that comes with rare disease parenting. You can be surrounded by loving family and supportive friends and still feel fundamentally alone because no one else is living your exact reality. The medical complexity, the advocacy battles, the emotional weight, the constant unknowns—it’s isolating in a way that’s hard to articulate.
But when you find another family walking the same path? That isolation lifts. Not because your challenges disappear, but because suddenly you’re not carrying them alone. Someone else knows the weight. Someone else speaks your language. Someone else celebrates the victories that seem small to the outside world but are monumental to you.
This 4th of July wasn’t just a vacation, it was a homecoming. A celebration of finally finding our people. A reminder that rare doesn’t have to mean alone.
Moving Forward Together
As we packed up and said our goodbyes (really, “text you in 5 minutes”), I felt different than I had in three years. Lighter. More hopeful. More determined. Feeling whole and full of gratitude. Because now we’re not just a single family fighting for recognition and research and treatments. We’re a community, small but mighty. We’re a force.
We’re in this together now. And together, we’re going to change everything for our girls.
To every rare disease family still searching for their people: keep looking. Keep sharing your story. Keep building visibility. Because somewhere out there, another family is looking for you too. And when you find each other, it will change everything.
Here’s to the power of finding your people. Here’s to not having to explain. Here’s to a shared understanding, a collective strength, and double the hope. Onward.
If your family has received a Lunapark Syndrome diagnosis, please reach out to lauren@rareolive.org. You have a community waiting for you.