Sophia’s Story

Why our family changed direction.

Sophia was a healthy child until around age eight, when a major illness seemed to set off a long and complicated medical journey. Over the years, she has faced multiple vascular compression syndromes, complex gastrointestinal problems, surgeries and care that has taken our family across the country.

Today, at 13, Sophia’s care is a major part of our family life. It is also one of the reasons Mike stepped away from the constant travel that came with commercial construction. We wanted to build businesses that let us stay closer to home while still using the experience and creativity that have always been part of our family.

Our experience with Sophia also led us to become involved in advocacy for patients with vascular compression syndromes.

Why the zebra matters to our family

For families dealing with rare and often misunderstood conditions, the zebra is more than a symbol. It reminds us that the answer is not always the common one—and that patients deserve to be listened to when something does not add up.

Sophia’s journey has changed the way we see the world. It has taught us to ask questions, keep learning, celebrate the good moments, and speak up for the families who are still searching for answers.

Sophia’s Shield: turning experience into support

Sophia’s Shield is a patient-advocacy initiative of the Vascular Compression Alliance Foundation. It focuses on helping people navigating vascular compression syndromes feel heard, respected, and supported during the clinical process. It puts the patient’s voice at the center of the conversation.

You can learn about Sophia’s Shield on the Foundation’s website or read more about the Vascular Compression Alliance here.