05/09/2026
I have not posted an update about Alec for some time because we have been attending appointments with private medical specialists and desperately hoping that he was finally moving towards answers and treatment.
We remain incredibly grateful to everyone who has followed Alec’s difficult journey, prayed for him and sent our family messages of kindness and support. However, we have now reached the point where Alec needs more than prayers and encouragement. He urgently needs someone within Queensland’s medical system to step forward and help him.
Following extensive whole-genome and whole-exome sequencing, which did not identify an explanation for Alec’s condition, his genetic specialist referred him to a highly regarded private neurologist.
After waiting more than six months for an appointment, Alec was reviewed in March, the private neurologist issued urgent requests for a PET/CT scan of his Brain and Body (exclude possible occult lesions), MRI imaging and comprehensive pathology testing under a GA.
We left that appointment feeling enormous relief as for the first time in a very long time, we believed the seriousness of Alec’s deterioration had been recognised and that these critical investigations would finally be completed.
That was more than six months ago.
Days became weeks, and weeks became months. Despite the investigations being marked urgent, they have still not taken place and during this time, Alec has continued to deteriorate and suffer from chronic head and body pain, severe uncontrolled movements and a further loss of function.
We have repeatedly confirmed that we will self-fund all private hospital, medical, anaesthetic, imaging and pathology costs and we can have Alec at the hospital at very short notice. Funding is not the barrier—the absence of a coordinated medical pathway is.
I personally contacted private hospitals in Brisbane, but each time I was advised that Alec’s neurologist would need to coordinate the admission and investigations. We have now been informed that the private neurologist, despite holding admitting rights within the private hospital system, has advised that he will not arrange Alec’s private hospital admission. Instead, we have been told that Alec’s GP needs to refer him to the same neurologist through the public system.
We are devastated and struggling to understand this decision.
Why were these investigations requested as urgent if no pathway was going to be established for Alec to undergo them? Why has Alec been left waiting for more than six months without a medical pathway while his documented condition continues to worsen?
For more than 12 years, the PET scan has been the one form of imaging that Alec has been unable to access.
Specialists have been willing to repeat MRI and CT scans that previously produced “normal” findings, yet the specifically requested PET/CT—to investigate possible abnormalities or occult lesions—has still not been completed.
A “normal” MRI or CT result does not mean that Alec is well. It does not explain his chronic pain, uncontrolled movements or continuing functional deterioration.
We are simply pleading for Alec to be given access to the investigations that his own private neurologist considered sufficiently important to mark as urgent in writing.
Every day, we witness Alec’s pain and suffering and we live with the terrible fear that a potentially identifiable or treatable condition may be worsening while these investigations remain incomplete.
We love and care for Alec with everything we have, but we cannot arrange a hospital admission or these complex investigations ourselves.
Only an appropriate medical specialist and hospital team have the ability to make that happen.
At times, we cannot escape the heartbreaking question of whether Alec’s pathway would have been different if our family had professional influence, medical connections or a public profile. No vulnerable person’s access to appropriate medical investigation should depend on who their parents are, whom they know or how loudly their family is able to fight.
Alec’s disability and inability to speak for himself should never make his life or suffering appear less important. Alec deserves the same urgency, dignity and opportunity to access appropriate healthcare as every other person.
We are begging Queensland’s medical system and the Queensland Government:
Please help our son
For more than 15 years, we have advocated for our precious son because he cannot advocate for himself. We will never stop fighting for his right to receive the same consideration, dignity and access to healthcare that would be expected for any other person presenting with serious, unexplained and medically documented deterioration.
If anyone reading this knows a specialist, hospital decision-maker, disability advocate or Queensland representative who may be able to help establish an urgent pathway for Alec, please contact us.
We are no longer simply asking, we are pleading for someone with the authority to help to please step forward.
Alec is unnecessarily suffering every day and deserves the opportunity to undergo these urgent investigations and to access any treatment options that may help improve his quality of life.
Please help us help our son because Alec’s life matters. ❤️
