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.

Erika shares her family’s seven-year journey to find a diagnosis for her son, Urban, who was eventually found to have SATB2-associated syndrome. With warmth and candour, Erika explains what it’s like to live through years of uncertainty, to celebrate small milestones, and to help build a global community.

Erika reflects on motherhood, advocacy, and balance – from the early fears of losing her child to the hope and purpose she found through founding the SATB2 Europe Foundation. Her story is one of resilience, love, and an unshakable belief in community and connection.

The song that Erika chose is Ain't No Mountain High Enough by Marvin Gaye and Tammi Terrell.

Acromegaly is a rare condition caused by a pituitary tumour that leads to excess growth hormone. In this episode, Carolyn shares candidly how her symptoms, which developed slowly and over a long period of time, were mistaken for menopause or normal aging, until a series of unusual infections led to her diagnosis.

She reflects on the shock of being told she had a brain tumour, the challenges of undergoing major surgery, and the ongoing reality of living with residual tumour and long-term treatment. We also talk about the importance of listening to your body, and the progressive journey to recovery and feeling your own self again. Carolyn’s story is one of resilience and hope: she has run marathons, completed triathlons, and learned to manage her energy carefully while still embracing life fully.

The song that Carolyn chose is Unwritten by Natasha Bedingfield.

Giselle shares her journey with Cushing syndrome, a rare and often misunderstood condition caused by an overproduction of cortisol. For years, Giselle’s symptoms were dismissed by doctors as lifestyle-related issues, despite her insistence that something deeper was wrong. She describes the frustration of being unheard, the relief of finally receiving a diagnosis, and the resilience it took to advocate for herself. Giselle’s story is not only about overcoming medical challenges but also about learning to trust her intuition, seek second opinions, and embrace recovery with hope and gratitude. Her message is one of strength, persistence, and encouragement for others who may be questioning their own health.

The song that Giselle chose is Rise Up by Andra Day.

Dariya’s rare autoimmune kidney condition, HSP Nephritis, has shaped much of her childhood and continues to affect her life today. Diagnosed as a child after a long and difficult journey to recognition, Dariya opens up about the physical struggles, hospital experiences, and the lasting impact of her condition. She describes how it affected her mental well-being, leading to PTSD, OCD, and borderline personality disorder. Yet, Dariya speaks with honesty and resilience about how therapy, persistence, and the support of her loved ones have helped her find stability and strength. Today, she works in healthcare herself, bringing compassion and understanding to patients with complex needs.

The song that Dariya chose is Hold My Girl by George Ezra.

Kelly speaks with openness and wisdom about living with a condition that is not life-threatening, but deeply life-altering – wet age-related macular degeneration (Wet MD). From the shock of her first diagnosis to the reality of ongoing eye injections, she offers a candid look into the emotional, physical, and practical challenges of losing central vision. She shares a down-to-earth approach to adapting to her new condition, reflecting on the balance between what we can and cannot control, the importance of medical research, and the need for more compassionate health insurance systems. Her story is not just about vision loss – it is about perspective and finding peace in the journey.

The song that Kelly selected is Time by Lauren Daigle and Aodhan King.

Daniel lives with a rare genetic condition, Tuberous Sclerosis Complex (TSC), that results in non-cancerous tumors to grow in various organs, including the brain. From being diagnosed as a child through visible skin signs to managing the complexities of healthcare and advocacy as an adult, Daniel’s journey is marked by courage and community. He opens up about the challenges of transitioning into adulthood, navigating a flawed healthcare system, and carrying the weight of an invisible condition. Daniel is passionate about ensuring adults with TSC are not forgotten and that healthcare becomes a human right, not a privilege.
He chose the song (Everything I do) I do it for you by Bryan Adams.