Grandmother to walk from Sydney to Melbourne to raise funds for rare disease.

Five-year-old Tristan is a special little boy – smart, happy, resilient. More resilient than most kids his age, as he’s one of just a handful of people suffering from a degenerative disease called Friedreich Ataxia.

Never heard of it? We’re ashamed to say the we hadn’t either. But Tristan’s grandmother is determined to change that. Fiona Dowdell is lacing up her joggers to embark upon a gruelling walk from Sydney to Melbourne to raise awareness and funds for the Friedreich Ataxia Research Association. Setting off from the Opera House on Monday, the doting Grandmother will trek more than 1100 kilometres to Federation Square – a journey that is expected to take roughly seven weeks. Following closely behind in a caravan will be Tristan’s grandfather and great-grandmother.

Named for Nikolaus Ataxia, the person who first described the disease, Friedreich Ataxia is a genetic, neurological condition that affects just 1 in every 30,000 people across Australia and New Zealand, and is most common among children and adolescents. It leads to loss of bodily functions and, ultimately, complete incapacitation. Just in case that wasn't cruel enough, it’s also often accompanied by diabetes, severe spinal deformity and heart disorders – the latter of which is often the ultimate cause of death. It’s a horribly unforgiving disease and, for now at least, there’s no known cure.

According to Fiona, Tristan is likely to be one of the youngest people ever diagnosed with FA – he was just four-years-old when doctors broke the news. “When Tristan was only one year old he struggled with walking and balance and was obviously not growing as would be expected,” she writes on the FAtoGo website. “After lots of tests and MRI's he was diagnosed with FA.”

Tristan currently relies on leg braces, a wheelchair and an electric scooter to stay mobile, and is undergoing regular physio, speech therapy and medical treatment. The gorgeous little boy has a long, gruelling fight on his hands, but his family are determined to do what they can to help the cause.

Good luck, Fiona. We're behind you.

Anyone looking for more information on Friedreich Ataxia can visit the FARA website. To keep track of Fiona’s journey, visit the FA to Go website.