In this powerful and inspiring episode, I chat with Nicola Vaughan, whose son Cian has the rare condition Smith-Magenis Syndrome. With only around 10 known cases in Ireland, Nicola shares her challenging journey of navigating the system to secure the vital support, resources, and school placements Cian needs. From battling bureaucracy to advocating for her son’s future, this conversation highlights the resilience and determination of families facing rare conditions. It’s an eye-opening look at the barriers families like Nicola’s face and a must-listen for anyone fighting for better support and understanding.

#RareConditions #DisabilityAdvocacy #SmithMagenisSyndrome #FightingForSupport

Hosted by Ciara Watson

Produced by Conor Prizeman

Hosted on Acast. See acast.com/privacy for more information.