Perth’s walk for a cause brings hope to families impacted by mitochondrial disease, WA clinical trial begins

For thousands of Australians living with mitochondrial disease, the Bloody Long Walk is much more than walking 35 kilometres.

The annual fundraising challenge, which this year will be on September 13, raises vital money for the Mito Foundation and awareness for mitochondrial disease — a group of rare genetic disorders that can prevent the body’s cells from producing enough energy to function properly.

For Perth mother Preeti Raghwani, every step taken in the challenge carries the memory of her daughter Ziya, who died in September 2019 at just 20 months old after developing a rare form of the disease caused by a mutation in the KARS gene.

Ms Raghwani described Ziya as very cheeky, a girl always with a big smile who loved music, the beach and dancing and was always giggling.

“She really valued life and she taught us to really see things that perhaps we were a little bit oblivious to see before; she really had that way about her,” she said.

“She lived a lifetime on this earth, she left us so much, more than we could have ever given her. It was like she lived an entire lifetime in just 20 months.”

As the Mito Foundation marks its 100th Bloody Long Walk nationally, Ms Raghwani and her family are continuing to turn their grief into hope for other families facing the disease.

“Living with a child like Ziya was really tough, but living without her is even more tough,” she said.

“If we can help other people and other families in any small way, then that’s time well spent.”

Ziya was born seemingly healthy before she suffered a massive seizure at just two months old.

From that moment her condition began to deteriorate, with mitochondrial disease eventually being investigated as a possible diagnosis.

The family have been involved with the Mito Foundation since around 2018 as they worked to understand what was happening to their daughter.

Ms Raghwani’s husband Janesh and his brother have since taken part in the Bloody Long Walk each year, raising money and awareness for the disease.

The 2019 Bloody Long Walk event was held just a few days before Ziya died.