Understanding Batten Disease: Supporting Families Through Complex NDIS Care
At More Than Support, we understand that every person’s journey with disability is unique — and for families living with rare or complex conditions, that journey can be especially challenging.
This week, we’re raising awareness of Batten Disease, a rare neurological condition that affects children and young people, and sharing how our NDIS services help families navigate daily care, support, and hope.
What Is Batten Disease?
Batten Disease is a rare, inherited disorder of the nervous system that typically begins in childhood. It affects how the body’s cells remove waste, leading to a gradual decline in physical and cognitive abilities over time.
While the condition is uncommon, its impact is significant. Children and young people living with Batten Disease may experience:
Seizures and vision loss
Changes in movement, balance, and coordination
Challenges with communication and learning
Behavioural or emotional changes
There are different forms of Batten Disease, and symptoms can vary, but all require ongoing, specialised support and compassionate care.
The Challenges Families Face
For families caring for a loved one with Batten Disease, each day involves strength, resilience, and love. Managing medical appointments, therapy sessions, education, and daily living needs can be overwhelming — especially when trying to coordinate support across multiple services.
Accessing the National Disability Insurance Scheme (NDIS) can help ease some of that pressure, but understanding and navigating the system can still feel complex. That’s where we step in.
Building Awareness and Hope
Raising awareness about Batten Disease is vital — not only to support research but also to ensure families receive the understanding, connection, and care they deserve.
We’re proud to share that our Founder will be performing with the Australian Doctors Orchestra in a special concert supporting the Batten Disease Support & Research Association Australia (BDSRAA) in Sydney. This meaningful event brings together healthcare professionals and musicians to raise awareness and funds for children and families affected by Batten Disease.
We encourage readers to learn more or get involved through trusted organisations such as the Batten Disease Support and Research Association Australia (BDSRAA) and Rare Voices Australia, which provide advocacy, information, and community support across the country.
At More Than Support, we proudly stand alongside families living with rare and complex conditions — listening, supporting, and empowering them every step of the way.
How More Than Support Helps
At More Than Support, we provide tailored NDIS services across Australia with Victoria and Brisbane more focused on Individual Support designed to meet the unique needs of individuals living with Batten Disease and other rare conditions. Our team brings together clinical knowledge, compassion, and consistency — supporting both the individual and their family.
MTS support worker smiling with Harper Murnane during an outdoor activity with Fire Rescue Victoria, representing compassion and connection for families affected by Batten Disease.
🏡 In-Home Care
We provide practical, person-centred assistance for daily living — from personal care and medication support to meal preparation and light domestic tasks. Our team ensures comfort and dignity while supporting family carers.
🩺 Nursing and Clinical Services
Our clinical staff understand the complexities of progressive neurological conditions. We work closely with allied health professionals, specialists, and families to maintain health, manage symptoms, and promote wellbeing at home.
🧭 Support Coordination
Navigating the NDIS can be confusing, especially for rare and complex needs. Our Support Coordinators help families understand their plans, connect with the right services, and ensure that supports work together seamlessly.
👥 Community Participation
We believe every person deserves meaningful connection. Our team helps individuals engage in social and community activities, promoting inclusion and joy — even in small moments that make a big difference.
🏠 Supported Independent Living (SIL)
When appropriate, we assist young adults and families to explore housing options with round-the-clock care, ensuring a safe, nurturing environment.
Start Your Journey With More Than Support Today
If your family is living with Batten Disease or another rare, complex condition, you don’t have to face it alone.
Our experienced team is here to provide consistent, compassionate care through the NDIS — from clinical support and daily assistance to community engagement and beyond.