Source : Perth Now news
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.
Ms Raghwani said a team of almost 60 people did the walk, but she was unable to take part in it herself.
“It was quite a big, amazing effort from the whole community that were backing us,” she said.
“Lots of fundraisers were done by little communities that we were part of.
“It’s amazing that everyone supported us.”
Ms Raghwani said it had been “such a privilege” to connect with other families and show them that after going through this it is not the end, it’s only the beginning.
“You just have to find that strength in whatever you’re going through and see where it takes you,” she said.
The Bloody Long Walk began in 2013 and has since grown into one of the Mito Foundation’s major fundraising events.
Across the 103 events, more than $28.1 million has been raised, with about 156,000 people taking part.
Perth’s 2026 event will be the 104th Bloody Long Walk, which by September 2 had 906 people registered to tackle the challenge which begins from South Perth and concludes at Cottesloe Beach.
The Bloody Long Walk manager Jane Hudson said the event was vital to Mito Foundation because it generated more than 75 per cent of its fundraising income.
“100 per cent of profits from The Bloody Long Walk will go to the Mito Foundation towards its support services, research and education/awareness programs,” she said.
Ms Hudson said a big thank you to walkers for all the support.
“We are a small charity and your support has a huge impact and means the world to us,” she said.
Mito Foundation advocacy and engagement manager Clare Hurst said the money went towards research, education and support services for people living with the disease and their families.
She said the fundraising had helped the foundation invest millions of dollars into research, support families through its helpline and contribute to advances in genetic diagnosis.
One of the foundation’s most significant achievements has been securing Medicare funding for genomic diagnosis of mitochondrial disease.
The organisation has also helped advocate for changes to Australian law that allowed mitochondrial donation — an IVF-based technique — to progress towards clinical trials.
The Perron Institute is one of four Australian sites participating in the Falcon study, a clinical trial testing a new medication for adults living with mitochondrial disease.
Ms Hurst said the Perth trial was being led by William Wallefeld, and will investigate whether or not the medication could improve muscle symptoms and fatigue.
“It’s such a signal of hope,” she said.
“Having a clinical trial that’s available in WA, we think is a fantastic milestone because the more we can have, the more we give West Australians affected by mito a more realistic chance to participate when the right trial comes along for them.”
Currently, there are more than 400 different mitochondrial diseases.
For Ms Raghwani, not a day goes by that her and her family do not talk about Ziya or she doesn’t pop up in conversation.
The Raghwani’s daughter, Mahi, now 11 years old, was very young when her younger sister died, but Ms Raghwani said she loved her with all her heart and even sleeps with a Ziya-shaped pillow every night.
Ms Raghwani is now just weeks away from completing her medical degree after previously working as a paediatric physiotherapist.
She hopes to bring her professional training and lived experience as the mother of a child with the disease into her work.
“I wished that for myself and Ziya, and I just want to continue to do that for my patients,” she said.
The Bloody Long Walk will give the family another chance to honour her little girl while also giving families hope.
“I am so blessed that she chose me to be her mum. I’m the luckiest mum in the world,” Ms Raghwani said.
