15/02/2026
" The rare disease patient is the orphan of the health system, often without diagnosis, without treatment, and therefore, without reason to hope. This needs to change. " - The Steve Waugh Foundation
As we approach Rare Disease Day on February 28th, I wanted to take a moment to acknowledge something deeply personal to my family and me.
Rare Disease Day is more than a date on the calendar. Itâs a reminder of the families walking long medical roads, the uncertainty they navigate, and the support that can make all the difference.
My family have a personal connection with rare diseases; our son Jackson was born with a rare disease called Langerhans Cell Histiocytosis.
His diagnostic phase stretched all the way to 18 months, a year and a half of questions, symptoms, tests, and uncertainty, before he was finally diagnosed with Langerhans Cell Histiocytosis at what was then Princess Margaret Hospital, now Perth Childrenâs Hospital.
He battled this disease having multiple biopsies, chemotherapy and steroids, many surgeries to insert and remove infusaports, MRI's, Xrayâs, CT scans, lymph node removal with long term antibiotics, water deprivation tests, and more blood tests than any child should ever face.
When he was four, the LCH left its mark again. Damage to his pituitary stalk led to a second rare disease, Arginine Vasopressin Deficiency â formerly known as Diabetes Insipidus. Two rare diagnoses before starting school. Two battles he never asked for but somehow met with a strength that still humbles me.
Living in the rare disease world means learning how much happens quietly.
Families navigating uncertainty.
Children fighting invisible battles.
Parents holding hope together with whatever they can find.
Itâs a world where rarity doesnât mean small, it means unseen.
Thatâs why awareness matters.
Thatâs why support matters.
And thatâs why the support from people like those at the Steve Waugh Foundation means so much, because they stand beside families who often feel overlooked.
And now, as he ages out of the children's hospital and approaches his final survivorship checkâup, it's a milestone that feels both surreal and sacred. Seventeen years of resilience, treatment, uncertainty, and hope. Weâre grateful every single day for how far heâs come, and for the rare light he carries.
It reminds me of the strength, resilience, and quiet courage that other children with rare diseases carry every single day.
This month, I will be donating a portion of every retail sale and service booked at Idlewild - from my business to the Steve Waugh Foundation. Itâs our way of giving back to the community that helps hold up many families when they need it most.
If you or someone you love is walking a similar path, these organisations offer real help, real guidance, and real understanding:
â¨Steve Waugh Foundation: provides support for children and young adults with rare diseases, offering funding for specialised equipment, medical supplies, therapies, and qualityâofâlife resources that help families navigate daily challenges.
â¨Rare Voices Australia: provides advocacy, resources, and community support for people living with rare diseases, helping families navigate complex systems, access reliable information, and feel connected to a national network that understands their journey
â¨The Histiocytosis Association: provides information, guidance, and community support for families affected by Langerhans Cell Histiocytosis (LCH), helping them access reliable resources, connect with others, and navigate the challenges of a rare disease journey.
â¨Diabetes Insipidus Australia: offers guidance, livedâexperience support, and reliable information for individuals and families navigating life with Arginine Vasopressin Deficiency â formerly known as Diabetes Insipidus, helping them feel understood, informed, and connected to a community that truly gets their challenges.
For every family still in the thick of it: youâre not alone.
For every child living with a rare disease: you are seen.
And for our boy... we are so proud of you.
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www.idlewild.au
www.stevewaughfoundation.com.au
https://rarevoices.org.au/
https://histio.org/
https://www.rch.org.au/clinicalguide/guideline_index/Diabetes_insipidus/?utm_source=copilot.com
