Episode 77: Marguerite Hughes - PWS
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.
