Skip to content
Home » Blog » The Unseen Voyage of a Rare Mom

The Unseen Voyage of a Rare Mom

  • by

When Michelle first learned of her daughter Hailey’s rare diagnosis, an ultra-rare genetic disorder called Jordan’s Syndrome (ppp2r5d), the ground beneath her seemed to shift. Facing the labyrinth of healthcare during the COVID-19 pandemic, she became a beacon of resilience, her story a mosaic of love, adversity, and unwavering determination. Join us as we unravel Michelle’s compelling narrative, revealing the raw and intricate journey of parenting a child with special needs. From adapting to virtual medical appointments to decoding a symphony of new allergies, Michelle’s candid reflections offer a deep dive into the realities that shape the world of ‘spoonies’—those remarkable individuals and families who navigate life with chronic illness.

Our exchange with Michelle transcends the personal and taps into the universal—the strength found in community and the solace in shared experiences. As she opens up about her therapeutic escape through blogging and the sanctuary of support networks, we are reminded that no one walks this path alone. Our conversation promises not just to touch your heart but to forge a connection, extending a virtual hand to all those who might find themselves in the echoes of Michelle’s journey. This episode is a testament to the power of storytelling, advocacy, and the unspoken bond that links us all in times of uncertainty and hope.

Be sure to check out @mamabearfor rare on all social media platforms (Facebook, Instagram, TikTok) and her website and blog at

My Spoonie Sisters (

Leave a Reply

Your email address will not be published. Required fields are marked *