Kevin opens up about living with PKU, a rare metabolic condition diagnosed at birth that requires lifelong dietary management. As a passionate advocate and storyteller, Kevin walks us through his journey, from early challenges of growing up with a restrictive diet to becoming a global voice for the PKU community. The conversation dives into mental health, feelings of isolation, access disparities in healthcare, and the healing power of music and connection. Kevin’s vulnerability and perspective offer not just education, but comfort to others navigating rare diseases.

The song that Kevin chose is Shadow Days by John Mayer.

A first on the podcast, Sylvain welcomes two guests, Kristina Morgan and Sana Ansari, both living with Type 1 Diabetes. They each have a very different journey with the condition: Kristina was diagnosed at age 7, while Sana received her diagnosis at 38, during the peak of the COVID-19 pandemic.

Their conversation is both heart-opening and educational, shedding light on what it's truly like to live a "prescribed life" and how chronic illness reshapes relationships, routines, and self-perception.

The episode explores the emotional landscape of diabetes, from the guilt around food choices to the fear of unpredictable lows and highs, and the impact of the diagnosis on identity. Despite the challenges, Kristina and Sana share how their friendship and shared experiences have fostered mutual support and understanding in both their professional and personal lives.

In this moving episode, I speak with Sarita Edwards, a mother, advocate, and founder of the E.WE Foundation, about her family's journey after her son Elijah was diagnosed with Trisomy 18 (Edwards syndrome). Sarita shares the emotional rollercoaster of receiving Elijah’s diagnosis at 22 weeks pregnant, the constant message of hopelessness delivered by healthcare professionals, and the overwhelming fear of loss that followed. Sarita explains how she fought this fear with hope and love, sharing a strong message of resilience.

Elijah, now eight years old, defies all medical expectations. Sarita’s deep reflections explore how grief, uncertainty, and stigma transformed into purpose, acceptance, and connection. Through their journey, she and her family built a foundation to support other families navigating rare diagnoses, aiming to provide practical answers to questions that many face in times of uncertainty.

This episode is a powerful reminder of how lived experience changes lives, and how hardship can lead to a sense of purpose, and be turned into positive actions.

The song that Sarita chose is Even If by MercyMe.

Barbara shares her extraordinary journey through unimaginable challenges, from a discovery of multiple myeloma to a stem cell transplant, induced coma, severe sepsis, and ultimately the life-altering experience of a double amputation. Despite the harrowing experiences, Barbara’s story radiates incredible resilience, hope, and positivity.

She speaks candidly about moments of darkness, vivid dreams during her coma, waking to devastating news, and rebuilding her life physically, emotionally, and spiritually. Her journey is an inspiring reminder that, even when life as you knew it changes forever, it’s still possible to live fully and gratefully.

Barbara’s strength and determination light up the conversation, making this an episode that stays with you long after you’ve listened.

The song that Barbara selected is Battle by Wookie.

MaryAnn opens up with honesty about her daily life with Complex Regional Pain Syndrome (CRPS) and Gastroparesis. She shares how a fall in the bathroom spiralled into a life-altering condition that left her unable to walk, in relentless pain, and dismissed by multiple healthcare professionals. Despite visible healing on scans, she was battling invisible agony.

We discuss the different ways MaryAnn manages her condition, with music therapy, strict routines, soft textures, and self-advocacy. We also talk about how she found a lifeline in ketamine therapy, a controversial yet transformative treatment that helped her regain mobility and her mental stability.

As a founder of several clinical research companies, MaryAnn also reflects on how living with a chronic illness has changed her perspective as a clinical professional, strengthening her belief in patient-centered care.

The song MaryAnn chose is I am woman by Emmy Meli.

This is the deeply moving story of Duncan and his son Torin, who battled Pearson Syndrome, a rare mitochondrial disease. With raw honesty, Duncan shares the journey of loving, raising, and ultimately saying goodbye to his son, revealing not only the heartbreak but also the enduring love and strength that shapes his family's life today. We talk about how they navigated an unpredictable and devastating diagnosis, and how it led the family to cherish every moment.

Now, in his son’s memory, Duncan is building a wooden sailing boat, fulfilling Torin’s dream of sailing to Wildcat Island on Lake Windermere, as inspired by his favourite book, Swallows and Amazons. This act of love and craftsmanship stands as a testament to a boy who made the most of his short life.

The song that Duncan chose is Hedwig’s Theme by John Williams.

Dwayne shares his journey of living with Pompe disease, a rare genetic condition also known as acid-maltase disease or glycogen storage disease type II. He opens up about how the condition changed his mindset, and his new mantra: enjoy life to the fullest. It drives his story, as he recounts navigating his diagnosis, participating in a clinical trial, and advocating for awareness. He emphasizes how finding a supportive community and maintaining positivity shaped his relationship with Pompe. This discussion is filled with resilience, humour, and an unwavering commitment to life despite challenges.

The song that Dwayne chose is Live It Well by Switchfoot.

Kelly is the mother of Austin, a teenager with PTEN-Hamartoma Tumor Syndrome. She shares her profound journey of navigating life as a parent of a child with a rare disease, battling the healthcare system, and finding joy in small, everyday moments. Kelly’s story highlights both the struggles and triumphs of caregiving, offering insights into navigating the medical system, managing mental health, and finding a new normal. Through resilience, advocacy, and self-discovery, she has turned her challenges into a mission to support others in the PTEN community.

The song that Kelly chose is Stronger by Kelly Clarkson.