Episode 58: Kelly Kearley - PTEN Hamartoma Tumour Syndrome

03/12/25 • 38 min

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.

The song that Kelly chose is Stronger by Kelly Clarkson.

Previous Episode

Episode 57: Jan Steele - Celiac Disease

Jan was diagnosed with celiac disease at just three years old. She shares her experiences, from childhood challenges to her current work in France, where she runs a gluten-free teaching kitchen. Through the conversation, Jan illustrates how celiac disease is not a limitation but an opportunity to embrace a mindful, health-oriented lifestyle. She offers practical advice, like focusing on whole foods and learning to cook from scratch, while also advocating for better awareness in restaurants and among healthcare professionals. Her positivity shines through her words, offering encouragement to anyone navigating similar journeys.

The song that Jan selected is Where I belong by Kurt Harris.

Next Episode

Episode 59: Dwayne Wilson - Pompe Disease

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.