Our story
This started with a little girl named Willow.
And a diagnosis that changed everything — and then, slowly, changed it back.
The beginning
Before we knew, we just knew something was different.
Willow was our world from the moment she arrived. Bright eyes, a laugh that filled every room, and a spirit that made everyone around her feel like the sun had come out. She was hitting milestones, growing, thriving — and then, gradually, things began to change.
She started losing skills she'd already learned. Her hands, which had reached for us so many times, began moving in repetitive, uncontrolled ways. She became quieter. The doctors ran test after test. We held our breath through every appointment.
The diagnosis came on a Tuesday. Rett syndrome — a rare neurological disorder typically caused by a mutation in the MECP2 gene, affecting nearly 1 in every 10,000 girls and even more rare in boys. There is no cure. There is no roadmap. There is only love, and a lot of figuring out what comes next.
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We didn't know what Rett syndrome was. We just knew our daughter, and we knew she deserved the whole world.
The turning point
A van changed what was possible.
Caring for a child with Rett syndrome means navigating a world that wasn't built for her. Wheelchairs, medical equipment, sensory needs — it all adds up. And one of the biggest barriers we kept running into was simply getting places. Our regular car wasn't enough. We needed space, accessibility, and the ability to bring everything Willow needed.
When we finally got a van, something shifted. Suddenly we could go to the park. We could drive to see family. The van didn't fix Rett syndrome. But it gave us back the feeling that we were still a family who could go places together.
We started talking to other families in the Rett syndrome community and heard the same story over and over: the van was the thing they needed most, and the thing they couldn't afford. So we decided to do something about it.
The mission
Wandering with Willow was born.
We started small — a community of people who loved Willow and wanted to help. Our goal is simple: raise enough to put an accessible van in the driveway of every family who needs one. Because no family should have to borrow a neighbor's vehicle just to get their daughter to a doctor's appointment.
We're just getting started. Every van we donate represents a family who can now go to school events, take vacations, visit grandparents, and simply live a fuller life. Each one is dedicated to Willow — who still loves car rides, still laughs at the wind through the window, and still reminds us every single day why this work matters.
"She can't walk, but she can wander. Help us make sure every family can say the same."
Help us give more families the freedom to go.
Every gift — no matter the size — moves a family closer to their first road trip.