Shelley Bowen | No One Will Care More Than a Parent

When this conversation with Shelley Bowen was recorded, there was no resolution yet. Families were still waiting — still pushing — still living inside the uncertainty of whether a treatment would ever make it across the finish line.

Shelley is a parent of children with Barth syndrome, and in this episode, she speaks from inside that reality. She talks about what happens when no one will care more than a parent — when families become advocates not by choice, but by necessity. When parents learn how to build websites, organize communities, navigate regulatory systems, and show up in rooms they never expected to enter, because their child’s life depends on it.

This conversation captures what that kind of waiting costs. The emotional weight. The exhaustion. And the quiet determination that keeps families moving forward even when progress feels impossibly slow.

Before we begin, though, there’s important context I want to share.

Since this episode was recorded, the story has moved forward. After years of sustained, parent-led advocacy, the first treatment for Barth syndrome has now been approved. That outcome is not part of this conversation — but it is an essential part of Shelley’s story today.

What you’re about to hear is a conversation from the depths of the struggle. The update shows what can happen when families refuse to stop advocating, even when the system moves slowly.