Marguerite shares the story of her son Louis and their life with Prader-Willi syndrome (PWS), a complex rare disease. Marguerite speaks with honesty, warmth and clarity about the medical, emotional and practical realities of raising a child with a rare genetic condition, from Louis’s fragile start in neonatal intensive care to adulthood in a specialist supported living environment. She explores complex themes such as food security, anxiety, autism, and the invisible labour of caregiving, while challenging societal assumptions about success, independence and what a “good life” looks like. Marguerite is a strong advocate for the PWS community, and the importance of social care for children and families dealing with a rare condition. This episode is ultimately a powerful reminder that with understanding, routine, community and the right support, people with Prader-Willi syndrome can live happy, meaningful lives – and that listening to those with lived experience is essential.

The song that Louis chose is Say Something by Justin Timberlake featuring Chris Stapleton.

This is the story of Yannis, nicknamed “Mr. Sunshine”, told by his mother Angela. Yannis is a 5-year-old boy who lives with the ultra-rare IRF2BPL-related disorder, which has affected his development in many ways. Angela describes the profound ways in which this condition has reshaped their lives, and how hope is their drive to make a difference for Yannis and other children affected by IRF2BPL.

Angela’s story is one of fierce advocacy and unconditional love. After Yannis’ diagnosis, she and her husband founded Yellow for Yannis, a foundation devoted to advancing research into the condition and supporting other families facing similar diagnoses. Angela balances the day-to-day joy of raising her son, with her fight to be heard by the scientific community to find a suitable treatment for Yannis.

Music, especially “Here Comes the Sun” by The Beatles, plays a central role in their lives. Angela naturally selected this song for this episode.

Kayleigh opens up about living with Addison’s disease, a rare condition where the adrenal glands fail to produce enough cortisol. Diagnosed at just 15, Kayleigh describes the medical journey that led to her diagnosis, the daily routines that keep her well, and the emotional resilience she’s built along the way. Despite the challenges of balancing chronic illness with study and performance dreams in musical theatre, she radiates optimism and determination.

Kayleigh’s story is one of strength, self-awareness, and adaptability – from planning university choices around nearby endocrinology hospitals to managing stress and illness triggers with remarkable maturity. Her openness about wanting more chronic illness representation in theatre is inspiring, as she reminds listeners of the importance of visibility and empathy.

The song that Kayleigh chose is The Chain by Fleetwood Mac.