288 - Choosing to Smile Even When it’s Hard

In this episode, Sean and Kyle count down the final days before setting sail on Rare At Sea, before diving into a candid—and frustrating—travel story. Kyle shares a cascade of challenges involving lost luggage, broken accessibility equipment, freezing temperatures, and the familiar reality of navigating a world not built for wheelchairs. The moment underscores how disability-related obstacles often stack up, turning ordinary travel into an exhausting ordeal.

The conversation then turns to an insightful interview with Hasitha Illa, a Friedreich’s ataxia advocate and creator of Life With A Hasi. Hasitha reflects on living with FA in both the U.S. and India, highlighting differences in accessibility, diagnosis, and cultural awareness. She also shares how advocacy, community, and spirituality helped her move from early frustration to acceptance and resilience.

With Rare Disease Day approaching, the episode centers on the power of connection, storytelling, and visibility—reminding listeners that progress often begins by simply sharing lived experience and continuing to move forward together.