Lillyanna was born in December 2018, and from the very beginning, she has been a force of nature.

She lives with multiple disabilities, including Mitochondrial Disease, Bulbar Palsy, Intellectual Disability, Autism, and Hypotonia. From day one, Lillyanna has had to fight harder than most — and she continues to prove just how strong she is.

At birth, we were told Lillyanna would never be able to sit independently, walk, eat food orally, or communicate. But Lillyanna had other plans.

Just two weeks after her second birthday, she sat up independently for the first time. Soon after, she learned to “bum shuffle” her way around the house, finding her own way to explore the world. With the introduction of weekly private physiotherapy sessions in 2024, her progress has continued to amaze us. Lillyanna can now stand independently for up to two minutes and has even begun taking unassisted steps — something we were once told would never be possible.

Her achievements don’t stop there. Lillyanna now receives most of her nutrition through oral purées, a huge milestone after previously relying on formula through a gastrostomy. She communicates using the Picture Exchange Communication System (PECS) and Aided Language Display (ALD) boards, and she is currently trialling an Augmentative and Alternative Communication (AAC) device — which she is thriving with. Each small step forward represents countless hours of therapy, determination, and hope.

The Lily Foundation has been part of our journey since Lillyanna was diagnosed with Mitochondrial Disease at just 14 months old. They provide vital support to families like ours and fund critical research into this life-limiting condition. Their work gives families hope — hope for better treatments, better outcomes, and ultimately, a cure.

By supporting this event, you are standing with Lillyanna and so many others affected by mitochondrial disease. You are helping fund life-changing research and giving families like ours something incredibly powerful: hope.

Thank you for being part of Lillyanna’s journey 💛