Our Story

My name is Lily Wahl, and I have always loved the small-town Montana life. In small towns, everyone knows everyone. It feels like one of the best places in the world to raise a family—and truly, it is.

But life in a small rural community can also become incredibly difficult and isolating when your child has a rare disease.

I am the mother of seven children. Before the birth of our youngest son, Levi, the medical system was something we rarely thought about. Aside from the occasional ear infection, doctor visits were few and far between. Life was busy, full, and wonderfully ordinary.

Then Levi was born—and everything changed.

From the moment he entered the world, doctors suspected something was wrong. Levi spent the first fifteen days of his life in the hospital while doctors ran test after test trying to understand what was happening. Even after extensive testing, there were no clear answers. Levi needed a feeding tube to eat, had dangerously high calcium levels, and faced several medical challenges that doctors could not explain.

Geneticists came to examine him, searching for clues.

But there was still no diagnosis.

And so began our family's diagnostic journey.

Over the years, we have traveled far beyond Montana seeking answers and care for Levi. We have visited specialists at children’s hospitals and major medical centers across the country—including Seattle, Portland, Rochester, and Los Angeles. At each stop, we hoped we might finally understand what Levi was facing.

Yet after nineteen years, we still do not have a diagnosis.

Instead, we have often heard the same words from doctors:

"Wow… we have never seen anything like this before."

Throughout this journey, we have been grateful for the many skilled and compassionate doctors who have cared for Levi. But navigating the medical system—especially from a rural state like Montana—has been incredibly challenging.

Levi’s rare condition has affected many aspects of his life, including his vision. Today he lives with significant vision impairment, adding another layer of complexity to his care.

We would love to continue seeking help from specialists outside of Montana, but we are often unable to do so because many out-of-state providers do not accept Montana Medicaid. This creates significant barriers for families like ours who are simply trying to find answers and the best possible care for our children.

Over the years, we have also discovered something else:

Families facing rare diseases are often incredibly isolated.

When a condition is rare—or even undiagnosed—it can feel like you are the only one walking that road. Resources are hard to find. Support networks are scattered. And many families are left navigating complex medical systems alone.

This website was created to change that.

Our hope is to build a place where families across Montana who are affected by rare diseases can connect with one another, share their stories, and find support. A place where no one has to feel alone in their journey.

But connection is only the beginning.

We also hope to raise awareness and work together to improve policies that affect rare disease families in Montana—especially when it comes to access to specialists, medical coverage, and resources for those living with complex conditions.

Most of all, we hope this space becomes a community.

Because while rare disease journeys can feel lonely, they don’t have to be.

Together, we can share our stories, support one another, and work toward meaningful change for rare disease families across Montana.