19/04/2026
Look what we've done!
This is the link to our team page
https://event.bloodylongwalk.com.au/login/event
My form of mito is MELAS Mitochondrial Encephalomyopathy Lactic Acidosis and Stroke Like Episodes.
It's about as fun as it sounds. A brief summary of MELAS:
MELAS syndrome (Mitochondrial Encephalomyopathy, Lactic Acidosis, and Stroke-like episodes) is a progressive, fatal condition, with a median survival time estimated around 16.9 years after the onset of focal neurological symptoms. While prognosis is highly variable based on severity, many patients have a reduced lifespan, with studies indicating an average age of death around 34.5 years.
Key Life Expectancy Information
Survival Rates: Most individuals survive approximately 17 years following the onset of seizures or other nervous system symptoms.
Age of Death: Studies show a median age of death in their mid-30s (e.g., 34.5
19 years). However, some individuals with milder symptoms or later onset may live into their 40s or 50s.
Prognosis Factors: Earlier onset, particularly in children, often correlates with a more severe, faster-progressing disease.
Causes of Death: Premature death is often caused by cardiac, neurological (status epilepticus), or renal complications
You cannot begin to imagine what it feels like having the clock ticking away like that.
I turned 50 Sept 2025.
But I choose to take it all one step at a time. With a little help from my furry friends, like Ted, and family.
You can join Jase and I on the walk, sponsor or donate, create your own team, or share the page link above.
They also need volunteers for the event if you'd like to help out that way. It would be amazing to see familiar faces 🥰
We appreciate any support you can give and thank those who already helped in some way.
