Seviyn was born with heterotaxy, a rare and complex condition that affects the placement and function of vital organs.

From the beginning, her journey has required intense medical care, advocacy, and strength. While Sevyn is now home and making progress, her diagnosis means ongoing care, monitoring, and future challenges remain part of her life.

Her story reflects the reality many families face, celebrating milestones while continuing to navigate long-term medical needs, uncertainty, and the need for support.

The Sevyn Strong Heterotaxy Awareness Walk exists to:

Increase awareness of heterotaxy and rare conditions
Support families navigating long-term medical journeys
Provide education, connection, and community
Honor children and families whose strength continues every day

This walk is about showing up, not just for one moment, but for the road ahead.

Seviyn Strong Heterotaxy Awareness Walk

Seviyn Strong Heterotaxy Awareness Walk

Team Members