About Rare and Mighty

We’re a family of four navigating life with love, faith, and fierce determination. Our youngest son, Brandon, was diagnosed with PURA Syndrome—a rare genetic condition that affects fewer than 1 in a million. Since that moment, our lives have changed in ways we never expected, but also in ways that have deepened our strength, our gratitude, and our purpose.
Brandon is the heartbeat of this blog. He is joyful, resilient, and strong beyond measure—our little “Chunk,” as we lovingly call him. Though he faces daily challenges, he continues to show us what it means to be mighty in the face of the unknown.
We created Rare and Mighty to share our journey: the beautiful and the brutal, the everyday moments and the big milestones. Our goal is to raise awareness about PURA Syndrome, provide hope to families facing similar challenges, and advocate for a world that better understands and supports rare conditions.
Whether you’re a fellow parent, a friend, a relative, a healthcare professional, or someone simply wanting to learn more—this space is for you.
We believe that stories matter. That even the rarest voices deserve to be heard. And that within every challenge lies the potential for strength, connection, and joy.
Thank you for being here. We hope our story reminds you that even in rare circumstances, mighty things can grow.
 

With love,
The Jobins
Founders, Rare and Mighty