Aidan McManus, a 22-year-old from North Melbourne, has faced a debilitating mystery illness for the past five years, which began when he was just 17 during his final year of high school. His mother, Angela McManus, recounted how it all started with Aidan experiencing tingling and numbness in his feet. Concerned, she took him to their general practitioner, who attributed his symptoms to fluid retention and prescribed medication that failed to alleviate Aidan’s suffering.
As time progressed, Aidan’s condition deteriorated, making walking excruciatingly painful, akin to stepping on tacks. Alongside this, he was diagnosed with post-viral irritable bowel syndrome (IBS), complicating his health.
Despite attending only around five weeks of Year 12 due to his illness, Aidan persevered and completed his high school certificate. The numbness in his feet worsened, leading to consultations with a neurologist who conducted numerous tests to uncover the cause of his ailment. Over three years, exhaustive testing, including blood tests, nerve biopsies, lumbar punctures, and genetic testing, yielded no definitive answers.
Ultimately, Aidan was diagnosed with axonal peripheral neuropathy, a progressive nerve disorder impacting the transmission of signals throughout his body. The medical team informed his family that there was no identifiable cause for his condition, stating it would likely worsen over time, possibly leading to wheelchair dependence. Unfortunately, this grim prediction has manifested as Aidan’s sensory issues have progressed to his hands. He now experiences extreme temperature sensations, where cold items feel scorching, and hot surfaces seem freezing.
Angela spoke of the profound impact of Aidan’s condition on his daily life; he can no longer cook and must exercise caution with food temperatures. His mobility has declined, resulting in weight gain due to decreased activity.
Aidan’s application for support from the National Disability Insurance Scheme (NDIS) was denied, with the agency asserting he did not explore all available treatment options, despite a neurologist’s letter indicating a lack of viable treatments. The neurologist described Aidan’s condition as progressive and supportive of his eligibility for the NDIS, indicating that he requires ongoing assistance due to the incurable nature of his diagnosis.
Angela expressed frustration over the NDIS’s disregard for the neurologist’s insight, suggesting that bureaucratic processes fail to consider the complexities of Aidan’s illness. An NDIS spokesperson stated that access criteria include the necessity of permanent conditions, which they claimed Aidan’s medical evidence did not consistently support.
The McManus family’s experience highlights the challenges faced by those with complex medical conditions navigating support systems while seeking answers and assistance.