The Digital Support Groups are led by mito community members and offer you the opportunity to connect with your local community. Please scroll to the bottom to register for this Digital Support Group.
Get to know your host: Preeti Raghwani
Introduce yourself and your role within the support group
I have been involved with the foundation for about 2 years now and have been involved in various different aspects seeking help and offering help where possible. I have a background in physiotherapy and NDIS which puts me in good stead in various ways and aligns me aptly to support others through my own experiences.
I work part time as an NDIS Specialist Support Coordinator and am involved in the Child and Adolescent Health Service Consumer Advisory Council as well as sitting my GAMSAT in the hopes of studying medicine some day. I was first introduced to the mito community after my beautiful little girl Ziya was diagnosed with the KARS genetic mutation which is a rarer subtype of Mitochondrial disease who we sadly lost in September 2019.
I hope to marry my professional and very personal experiences to facilitate the support group in WA to help other mito community members in as many ways as I can.
Tell us a little about your journey with mito
Our mito journey started when my daughter Ziya was first diagnosed in 2018 with the KARS mutation which is a rare subtype of mito that has very few documented and researched cases in the world. We were first introduced to the Mito Foundation and community when we were trying to find a place where we can get more support as well as offer help wherever we can to others in our position.
Ziya suffered from multiple manifestations and symptoms of her mito including a profound hearing loss, seizures, neuropathic pain, dysautonomia, dystonia among many others. This left Ziya with complex medical and physical problems which meant she was slowly deteriorating with time as mito took over her little beautiful body. Things took a turn when she was around 1 and a half years old and eventually she lost her life and left her lasting mark on the world with her biggest lesson in life for us to “Stop Existing and Start Living”.
Ziya was a really intense and important force of nature that inspired not only me but many around the world. She continues to inspire many especially me to achieve above and beyond what I thought I was ever capable of.
I hope that with all that the Mito Foundation stands for… some day no more “Ziya’s” will die and mito will have a cure! That is my ultimate dream for Ziya and the community.
How have Support Groups helped you in the past?
Support groups have always helped me not only practically, to understand the condition that affected my little girl but also mentally to be able to understand the processes of the body that were so different with mito. I was able to find specialists and more insight into treatment options out there and ways in which I could help give Ziya a better quality of life.
What atmosphere would you like to create in the group?
An open, honest and comfortable atmosphere where people are able to build confidence and support each other with respect and dignity.