When our daughter Mila was born, she was a happy, curious little girl who filled our lives with so much joy. Like any parents, we dreamed of watching her grow, learn and experience everything life has to offer.
As Mila approached her second birthday, we began noticing subtle changes. She was no longer reaching developmental milestones and slowly started losing skills she had already mastered. What followed was months of appointments, tests and uncertainty as we searched for answers.
On 1 February 2025, our world changed forever when Mila was diagnosed with Infantile Neuroaxonal Dystrophy (INAD), an ultra-rare, progressive neurodegenerative disease that causes childhood dementia. We were told there was no cure and no approved treatment.
Nothing prepares you for hearing that your child has a life-limiting condition.
Alongside the heartbreak came an overwhelming number of medical appointments, therapies, equipment trials and the reality of navigating a disease that very few people had ever heard of. We also discovered just how isolating a rare disease diagnosis can be and how limited the support available was for Australian families.
Rather than accepting that nothing could be done, we asked ourselves, “What can we do?”
That question led us to establish Rare Voices Australia Partner, The INAD Foundation Australia.
My husband Andrew and I founded the organisation because we wanted to ensure that no family facing an INAD diagnosis would feel as alone as we did. We wanted to create a community that offered support, connection and hope, while also helping to accelerate research towards effective treatments.
Today, The INAD Foundation Australia works alongside researchers, clinicians and international organisations to support research, advocate for greater awareness of INAD and childhood dementia, and provide support for families navigating this devastating diagnosis. We are proud to be helping fund and support promising gene therapy research while building a network of hope for families across Australia and internationally.
Although every day brings new challenges, Mila continues to inspire everything we do. Her resilience, determination and beautiful smile remind us why this work matters. She has shown us that hope isn’t about denying the challenges—it is about believing that together we can create a better future.
Everything we do is for Mila, but our mission extends far beyond our own family. We dream of a future where families receive earlier diagnoses, greater support and access to life-changing treatments. Most importantly, we dream of a day when no parent is told there is nothing that can be done.
Until then, we will continue to advocate, raise awareness and work tirelessly to help change the future for children living with INAD and other rare diseases.
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Janette’s Story