'No more pain': Mum's touching tribute to 'beautiful boy'
"BUDDY, you won."
Miller O'Flynn is being remembered as a strong, courageous and beautiful boy after he lost his battle with an extremely rare disease last month.
The Aroona boy was diagnosed with pantothenate kinase-associated neurodegeneration in 2015 and according to his mother, Sophie Cashen, was only about one of three cases in Australia.
People with the disease lack a chemical necessary to metabolise a vitamin in the brain. Without normal levels of this metabolite part of the brain degenerates, causing severe problems with walking, coordination, vision, speech and swallowing.
The condition was revealed after Miller contracted the common cold and began making involuntary movements.
Within 10 days, the disease had impacted Miller so much he was unable to walk, eat or speak properly and the degenerative nature of the disease meant it was unlikely he would make it past his 10th birthday.
On May 15, Miller's fight ended. He was nine-and-a-half.
"You fought one hell of a fight mate, and you did it. You did an amazing job my beautiful boy," Ms Cashen said.
Ms Cashen said she would continue Miller's fight and keep raising awareness about the debilitating disease.
"His legacy will live on. I don't know how yet, but I feel empowered to use his and our story to help other people somehow," she said.
Throughout Miller's short life, his message was heard around the world as families of sufferers fought to find a cure.
"He changed everyone's lives. People have said they parent differently, they appreciate their children and what they can do," Ms Cashen said.
"Miller has helped bring people back to now and focus on what is important.
"He's taught me everything I know. He's the strongest kid, I am so proud of him."
Even though it was too late for Miller, other children with the disease will soon have access to treatment.
The Spoonbill Foundation, a US-based not-for-profit, has developed a compound, CoA-Z, which has been shown in tests to fix all biomarkers of the disease in the brains of mice and fruit flies.
According to their website, it's going to take $350,000 of funding for the group to create the first large batch of the compound and another $70,000 to perfect the biomarker blood test.
From there, human trials begin at an estimated cost of $35,000 per patient and could total between $6-22 million.
Ms Cashen has urged people to support The Spoonbill Foundation's goal to help other children. So far, about $1.4 million has been raised.
She said she was happy to provide information and support for other families going through what she had.
"I know I'm in a position where I have some knowledge and understanding that could help others, or just simply be there for other people," she said.
"If anyone is in a situation where they need a friend and someone who understands I am here.
"This world is really scary and isolating for people in situations like mine. Miller's always brought people together and I don't want that to stop."