Managing the challenges of mitochondrial disease (mito) alongside all other family responsibilities can be daunting. The following webpage is designed to provide useful resources and services to manage your child's journey with mito and help you maintain the energy to focus on your family.

Personal Stories

Rex has a significant disability and some developmental delay – he is unable to walk and talk, requires ongoing assistance with ambulation, dressing, feeding, toileting – he continually surprises his family, against all odds, with his increasing levels of comprehension.

Key Services

Call the Mito Helpline to talk to a support officer for general advice, assistance in seeking a referral or more information on Mito Foundation support services.

Our dedicated Patient Pathways Nurse will work with you to develop a tailor-made care plan to provide support, education and connection with other services.

Attend a support event in your local area or online, including Information Days, Mito Parents Meet-ups and Mito Connect Calls to keep you informed and connected.

The Mito Registry collects important information about Australians with confirmed or suspected mito for the purpose of research into treatments and cures.

Helpful Resources

Link to Tips on how to strengthen your case for NDIS support Video

Tips on how to strengthen your case for NDIS support

Video

At a Perth Mito Information Day, Tammy Whait covered ways to strengthen your case for NDIS support when applying for the first time or approaching a plan review.

Link to Diagnostics changes from genomics and new technology Video

Diagnostics changes from genomics and new technology

Video

At a Perth Mito Information Day, Prof. David Thorburn provided an overview of the causes of mitochondrial disease and how the diagnostic process has been changed by genomics and other new technologies.

Link to Physiotherapy options for Children living with Mito Video

Physiotherapy options for Children living with Mito

Video

At a Perth Mito Information Day, Amy Piesse explored best practice physiotherapy options for children living with mito.

Link to Diet and Exercise for Children with Mito Video

Diet and Exercise for Children with Mito

Video

At a Digital Paediatric Mito Information Day, Dr Maina Kava spoke about nutritional and exercise therapies that specialists use to improve the quality of life and health outcomes for children with mito.

Link to Palliative Care - Supporting the Child and Family Video

Palliative Care - Supporting the Child and Family

Video

At a Digital Paediatric Mito Information Day, Dr Martha Mherekumombe shared an overview of paediatric palliative care.

Link to Update on Supplements and Treatments for Children with Mito Video

Update on Supplements and Treatments for Children with Mito

Video

At a Digital Paediatric Mito Information Day, Dr Shanti Balasubramaniam provided an overview of the therapeutic approaches used to treat patients with primary mitochondrial disorders.

Link to Palliative Care for Mito Kids Fact Sheet

Palliative Care for Mito Kids

Fact Sheet

This fact sheet helps you navigate the considerations of palliative care for your child and how to access the service.

Link to Mindfulness to Manage Your Health and Life Changes Video

Mindfulness to Manage Your Health and Life Changes

Video
Carolyn Uhlmann (Psychologist), provides great tips to manage the health and wellbeing changes that come with mito through practical mindfulness techniques.
Link to First Steps with Kids Fact Sheet

First Steps with Kids

Fact Sheet

This fact sheet can help to guide you in some of the first steps you may want to take after receiving a mito diagnosis for your child and aims to help you develop a plan for the future.