Find information and support for your child, your family and the people involved in their care.
This page is for parents, carers and other adults supporting a child with mitochondrial disease (mito). Older children and young people may also find some sections useful.
You can use this page to help you find whats right for you now.
Mito Foundation Helpline
The Helpline is a starting point if you have questions, would like general information or are unsure which support may be relevant.
Peer support
Access one-on-one support through the peer support network to connect with others who have lived experience of mito.
Events
Our events are opportunities to build knowledge, connect, and share experiences with the mito community.
Mito support community for mito families
A Facebook group for parents, carers and families impacted by mito. The group offers an online space to connect with other families.
Support groups for different types of mito
Some types of mito have dedicated Facebook communities or support groups.
Visit the types of mito page to see whether your child’s type of mito is listed. On the relevant page, open the Support groups tab to find available community links.
Some groups are managed outside Mito Foundation. Their membership, moderation and privacy arrangements may differ.
Different emotional responses
Supporting a child with mito can bring different feelings at different times. These feelings may change when your child’s health, care or support needs change.
You may relate to some of the words in the image, all of them or none of them.
There is no single or expected way to feel.
Support and services
Get free, independent help to understand and use the National Disability Insurance Scheme (NDIS).
Mito Foundation’s NDIS Navigation Service is for people in Australia with a confirmed diagnosis of mito.
Access the NDIS Navigation Service
Find information about help with money, transport, housing, equipment and daily life.
This support is for people with mito, families and carers, whether or not they use the NDIS.
Find health professionals and clinics with experience supporting children impacted by mito.
Mito Foundation can help you explore the available directories and find options that may be relevant to your child’s needs.
School can be an important part of your child’s daily life.
Mito Foundation has information sheets, templates and activities for parents, carers and educators. These resources can help families share information about mito and plan support throughout a child’s school journey.
Paediatric palliative care can support a child’s comfort, wellbeing and quality of life. It can also provide support for the whole family.
Palliative care can be provided alongside other care and treatment. It is not only for the end of a child’s life.
Supporting your child and family
Children may have questions about mito and what it means for them.
A little book about mito is an illustrated resource that can help families talk about a child’s diagnosis. A downloadable and printed version is available.
Read a little book about mito
Parents and carers may need to share their child’s needs with health professionals, schools and support services.
This resource covers preparing for appointments, finding reliable information and taking part in decisions about a child’s care.
Read be your child's advocate
When a child has a serious or life-limiting condition, their brothers and sisters may have questions and different feelings.
This resource from Paediatric Palliative Care Australia offers practical ideas for talking with siblings in an open and age-appropriate way, and helping them feel included and supported.
Read sibling support (external)
Find information that may help you prepare to talk about mito with relatives, friends and other people involved in your child’s life.
You can decide what to share and when the time feels right for your family.
Read about talking with family and friends
Emotional wellbeing
Children and young people may have support needs and preferences of their own.
The Mito Foundation mental health hub shares details of services for young people. The Wellbeing Hub can be searched by age, location and type of support.
Support for young people
Family members, friends and carers may also have questions or need information and support for their own wellbeing.
Mito Foundation has separate information for people supporting someone living with mito.
Find support for families, friends and carers
The Finding a Way video series from Sydney Children’s Hospitals Network explores shock, uncertainty, isolation, grief and the support that can help families through difficult times.
The series was developed for one group of families, but some themes may also feel relevant to families living with other complex or long-term health needs.
Watch living with sereve epilepsy (external)
Grief can relate to diagnosis, changes in health, loss of independence, anticipated loss or bereavement.
Mito Foundation has information and resources for people experiencing grief and loss.
Find support for families, friends and carers
Still unsure where to start?
The Mito Foundation Helpline can help you find information and understand which Mito Foundation services or resources may be relevant.
Tyler’s mum, Abbey, says the palliative care team changed their lives. She explains that palliative care offered knowledge and support not only for end-of-life care, but also for managing Tyler’s needs and helping him live as comfortably as possible.
For Abbey, involving palliative care gave the family another source of support while living with a rare, life-limiting condition.
Helpful resources
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: 1.1
Date published: 22 February 2024
Last revised: 28 July 2026Â Â Â
