When your child receives a diagnosis of mitochondrial disease (mito) it can be overwhelming and may leave you experiencing a rollercoaster of emotions.

But you're not alone. If you need more information or someone to talk to, you can call our Helpline on 1300 977 180. We're here to help you through this journey.

It's important to know that there's no right or wrong way to react to your child's diagnosis of mito. Each person is unique, and it's common to experience a wide range of strong emotions, such as:

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Receiving a mito diagnosis can make you feel lonely like nobody else understands. But you're not alone. There are people you can talk to who have been through similar experiences. Our Mito Meet-ups and Peer Support Network can connect you with the mito community.

Support Services

Our events are opportunities to build knowledge, connect, and share experiences with the mito community.

Acesss one-on-one support through the peer support network to connect with others living with mito.

Our Pathways Telehealth nurse will work with you to develop a tailor-made care plan.

Access the NDIS Navigation Service for resources, education and 1:1 guidance on the NDIS.

Resources to help parents, carers and teachers support a child affected by mito throughout their school journey.

Tyler’s mum, Abbey-lee says “Palliative care team changed our lives and if we could give advice to any parent of a child with any form of rare disease/life limiting illness it’s don’t be afraid to involve palliative care, they have a wealth of knowledge not just for ‘end of life’ but for managing and making life comfortable in the time that you may have”. 

Disclaimer: Resources provided by the Australian Mitochondrial Disease Foundation Limited (Mito Foundation), offers general information and is not a substitute for medical advice. It is essential to assess the suitability of the content for your individual circumstances and make decisions based on your medical condition. The information’s accuracy is subject to change, and we do not guarantee ongoing currency or availability. While efforts are made to ensure accuracy, Mito Foundation is not obligated to provide updated information. The copyright for this document and its content belongs to, or is licensed to, Mito Foundation, and reproduction without prior written consent is prohibited.

Author(s): Mito Foundation
Version: 1
Date published: 22 February 2024