Jaymee Hughes on Loving Noah Through Zellweger Syndrome, Saying Goodbye, and Learning to Live with Grief

Episode 7 • 12th March 2026 • Her Kind of Brave • Her Kind of Brave

00:00:00 01:28:24

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In this episode of Her Kind of Brave, Chloe and Kellie sit down with Jaymee Hughes, mum to Noah, who was born with a rare genetic condition called Zellweger syndrome. Jaymee shares the story of Noah’s life from the beginning — the excitement of falling pregnant, the subtle signs that something wasn’t quite right, and the long weeks of testing that eventually led to a life-limiting diagnosis when Noah was just four months old.

She speaks candidly about caring for a child with complex medical needs, navigating the emotional reality of being told your baby may not live past their first birthday, and the delicate balance of preparing for loss while still making the most of the time you have.

This episode also explores life after loss — returning home to a quiet house, learning how to carry grief while continuing to live, and the quiet ways Jaymee now honours Noah’s life every day.

Guess Bio: Jaymee Hughes is a mum and advocate sharing the life and legacy of her son Noah, who was born with Zellweger syndrome — a rare genetic condition that affects multiple organs and is life-limiting.

Through her honesty, Jaymee hopes to help other families navigating loss feel less alone — and to keep Noah’s story alive through the love he left behind.

You can follow Jaymee’s story on Instagram at @the_hughes_journey

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