Six-year-old Tallulah Moon is a little local legend – a bright, beach-loving Sunshine Coast kid with a big smile and even bigger spirit.
But behind that smile is a fight far bigger than most children her age could imagine.
Tallulah has SPG56: a rare and progressive neurodegenerative disorder that gradually robs children of their mobility and independence. Until recently, the condition was considered untreatable.
Tallulah’s diagnosis set her family members on a path they never expected – one that has now sparked the development of a world-first therapy designed to replace the faulty gene responsible for the disease.
What began as one family’s determination to help their daughter has grown into an international research collaboration edging closer to clinical trial.
Tallulah’s father Chris Whitrod, co-founder of the Sunshine Coast charity Our Moon’s Mission, is overseas meeting with hospital teams to establish a trial site. This is a significant milestone for the locally led initiative.
To help fund the next stage of research, Our Moon’s Mission has launched its 2026 Raffle for Rare campaign, in partnership with Lady Elliot Island Eco Resort. The major prize is a trip for two to Lady Elliot Island on the Southern Great Barrier Reef, valued at $2300.
Tickets are $10, with bundle options available. Organisers say every dollar raised will help advance the gene-therapy program and support children with rare neurodegenerative disease.
Head to the online raffle for all the details and tickets.
Visit raffletix.com.au/raffleforrare2026. The prize will be drawn on February 28 to coincide with Rare Disease Day.
