In Honour of Timmy Lloyd, 36yo, NP-C
- ANPDF
- Dec 3
- 3 min read
11th September 1989 to 2nd December 2025
It is with deeply broken hearts that we share the passing of our beloved Timmy Lloyd — known to so many as our RockGod. Born on 11 September 1989, Timmy left us on 2 December 2025, surrounded by love, music, and the people who cherished him.
From a young age, Timmy’s life was shaped by the complex and challenging journey of living with Niemann-Pick Disease Type C (NPC), a rare, progressive neurological condition. When Timmy and his older brother, Matthew Lloyd, were diagnosed, life shifted dramatically for their family. Their mum, Mandy Whitechurch, was told there was no available treatment and to simply “go home and make memories” — a devastating message that led her to fight for change and ultimately establish the Australian NPC Disease Foundation (ANPDF) [1].
“You don’t have your kids to outlive them,” Mandy once said — a raw expression of love, grief, and courage shared during an interview that brought national attention to NPC [1].
A Life Lived with Courage and Heart
Timmy’s life was never defined by the limitations of NPC. Instead, it was shaped by the resilience, warmth, and unmistakable spark that he carried with him every single day.
Diagnosed at age 16, Timmy was given a grim prognosis and a short life expectancy [1]. But Timmy defied expectations again and again, thanks to the powerful combination of expert care, family love, community support, and the unbreakable strength that became his trademark.
Over the years, Timmy and his family shared their journey through multiple national media stories, helping to raise awareness of NPC and the urgent need for research [1][2][3]. Their advocacy helped build a stronger support network for families across Australia, with the ANPDF now assisting more than 30 families nationwide [3].
Held in a Circle of Love
Throughout Timmy’s life, many people played a vital role in ensuring he was surrounded by comfort, dignity, and joy.
Mandy, Mick, and Matthew wish to express their deepest gratitude to: Matt, Cliff, Skye, Jacinta, Ebony, Teagan, Ray, and Jordan, as well as the many family members, friends, carers, and community supporters who enriched Timmy’s life. Your kindness was a constant source of strength — for Timmy and for the whole family.
Timmy’s Lasting Legacy
Though Timmy has taken his final bow, his impact is far-reaching and enduring.
His life inspired the creation and growth of
the ANPDF, a lifeline for families affected by NPC.
His story helped bring national attention to childhood dementia and rare diseases.
His courage continues to energise advocacy for better treatments and access to care.
And his spirit — full of music, humour, and quiet strength — lives on in the hearts of everyone who knew him.
Farewell, Timmy
As we say goodbye, we imagine Timmy beginning his “farewell tour” — free from pain, surrounded by the music he loved, and remembered forever as the legend he truly was.
Rest peacefully, RockGod.Your light will carry on through all of us. 🎸✨
*Photos shared with permission from Timmy's family.
To join our fight, as well as fund vital research for a cure, support the Australian NPC Disease Foundation in its goals of "Research. Cure. Persevere."
Ways to support NP-C in Australia:
Shop at our online NPC store
Fundraise your way! Check our free resources and inspo online.
References
ABC News. Childhood Alzheimer’s: Research into rare disease may hold key to treating dementia.
ABC Coverage & feature articles on the Lloyd family and Niemann-Pick Disease.
InLife Independent Living. NPC Gala and family story features.
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