Episode 55: Laura Will - Polymicrogyria

01/29/25 • 38 min

Laura shares her experience as the mother of Alden, a child living with polymicrogyria, a rare brain malformation. With striking honesty, she speaks to the challenges, unexpected joys, and the lessons she's learned about resilience and acceptance. Laura’s narrative illustrates the struggles of parenting a medically complex child, from grappling with sleep deprivation to fighting for appropriate resources in the school system. Yet, through it all, her unwavering love for Alden and her fierce advocacy for his dignity and well-being shine through.

The song Laura chose is What a Wonderful World by Louis Armstrong.

The song Laura chose is What a Wonderful World by Louis Armstrong.

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Episode 54: Joanne Paquette - Ollier's Disease

Ollier's disease has shaped Joanne's life since infancy. Her story is one of resilience, adaptation, and hope, as she recounts the challenges of undergoing numerous surgeries, navigating family dynamics, and finding ways to thrive despite her condition. Our conversation dives into Joanne's work as the founder of RAREsies, her mission to support those with rare diseases, and her advocacy for education and awareness. Through her words, Joanne radiates a spirit of determination and a belief in the power of human connection. As she shares her struggles and triumphs, she offers profound insights into living with a rare disease and how one can turn adversity into strength.

The song that Joanne chose is Love Shack by the B-52's.

Next Episode

Episode 56: Jenny Jones - Familial Adenomatous Polyposis

Jenny recounts a deeply personal story of struggles, courage and self-discovery, as she looks back on her battle with Familial Adenomatous Polyposis (FAP). A traumatic surgery experience had an extremely negative impact on Jenny's mental health, leading to a childhood marked by medical PTSD and deep depression. Through heartfelt dialogue, Jenny shares her journey of diagnosis, advocacy, and acceptance. She has transformed her struggles into a mission to improve lives through awareness and research.

The song that Jenny selected is Sound of Madness by Shinedown.