Growing up unaware of a family curse, I later learned I was the first person in my family diagnosed with a rare genetic disorder, likely linked to my late grandfather. My health decline began in 2008, after a violent assault at work resulted in a severe spinal injury and post-traumatic stress disorder (PTSD). During this traumatic period, I underwent Australia’s first advanced spinal disc replacement, a successful but psychologically challenging procedure. This incident masked many of the neurodegenerative changes over the next decade, which made for a long diagnostic odyssey to come.
Over the next seven years, I built a family business, rebuilding my life only to injure my knee, leading to a slow, puzzling decline in mobility and a feeling of walking through mud. At nearly 30, after a neurologist noticed my gait and coordination issues, I was diagnosed with X-linked Adrenoleukodystrophy (ALD)—a progressive, incurable neurodegenerative disease damaging nerve myelin caused by a mutation in the ABCD1 gene—and Addison’s Disease, a life-threatening adrenal condition requiring daily management. The diagnosis was devastating and along the lines of, “We have a diagnosis. I’m sorry there is no treatment and no cure. Here is some information. Good luck.”
I vividly remember researching ALD on my phone and feeling overwhelmed by its pain and despair. Regular brain MRIs now serve as a form of ‘Russian roulette,’ checking for lesions in my brain that might qualify me for a bone marrow transplant, an uncertain hope for slowing the disease. Despite there being no cure, I remain optimistic, supported by a dedicated healthcare team, and I’m approaching my 40th birthday with declining mobility but no cerebral lesions yet. Unfortunately, managing my significant neuropathy due to nerve damage has been challenging.
My greatest strength has come through purpose and community. I recently sold my business and now work with the Western Australian (WA) All Abilities Football Association part-time, leading wheelchair football, coaching, and promoting inclusive sports. I also volunteer with Wheelchairs For Kids, building all-terrain wheelchairs for children in underdeveloped countries worldwide.
As a member of the rare disease community, I serve as the WA contact and peer support leader for Rare Voices Australia (RVA) Partner, Leukodystrophy Australia, helping families navigate diagnosis and grief. I participate in ALD Connect and advocate for change, speaking with government officials and researchers about improving diagnosis and support.
As an RVA Ambassador, I aim to inspire others through my journey. While balancing medical routines—MRIs, endocrinology, physiotherapy—I stay active, mentor younger athletes, and keep busy with para-kayak and wheelchair sports such as athletics, basketball, and tennis. I also lead inclusive programs.
My greatest motivation is my family—my wife Kristy and son Zac—who ground me in love and resilience. Though my wife absolutely hates it, my Instagram handle is @A_Diary_of_a_Dead_Man. This isn’t a defeatist statement but a personal line in the sand to myself that though I’m in an unenvious position, I am committed to spending the indefinite time I do have in the best possible way, whether that be through sport or advocacy. Hopefully, someone can find something in my story that gives them strength, or it can elevate those that endeavour to make a positive change in the world.
My story is one of survival and transformation, demonstrating that courage, compassion, and purpose can create meaningful change in the face of adversity.
