A cruel disease is slowly robbing young Skye Robson of the things she enjoys.
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Diagnosed with Sanfilippo syndrome, a form of childhood dementia, when she was just four, in the past 12 months she has lost most of her speech, her legs are getting stiff so she falls more often, and she can no longer feed herself.
But the smile of the gutsy 12-year-old is as big as ever and her supporters are more determined than ever to raise the funds needed to help find a cure for the rare disease.
For the third year, two of Skye's carers Teghan Henderson and Bree Pellow are spearheading the Steps for Skye fundraiser which challenges individuals or teams to walk 15,000 steps a day during August to raise money for the Sanfilippo Children's Foundation to fund much-needed research toward a cure.
"Last year we raised $27,000 and Skye's dad is very determined to double it and get to $50,000 this year," Ms Henderson said.
"Skye is still mobile but we definitely notice it's getting harder and she appears to be in a bit more pain sometimes," Ms Henderson said.
"I don't think she fully understands what is actually happening."
Just a handful of children in Australia have Sanfilippo syndrome, which typically takes the lives of its sufferers between the ages of 12 and 20.
As a toddler, Skye's parents Daeng and Mark noticed she was not meeting the developmental milestones of other children her age and suspected she had a developmental delay.
The reality was much worse, with the family receiving the Sanfilippo syndrome diagnosis when Skye was four. There is no treatment and no cure, which makes funding research toward a cure - and raising awareness of the disease - a priority.
Children with Sanfilippo syndrome experience extreme hyperactivity in the early stages of the disease in which some children walk thousands of steps a day. As the disease progresses - and they experience neurological decline - they typically lose the ability to walk.
Steps for Skye began in 2019 with 12 or 15 participants, and has grown every year with more than 40 currently signed up for the 2022 event.
This year's participants include members of Dunnstown netball club near Ballarat in Victoria's Central Highlands and Skipton netball club in Victoria's western district.
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"A lot of my family are involved, and a lot more from my netball club Dunnstown which Skye's brother now plays footy at so they see Skye around at training and on Saturdays so a lot of them are now involved," Ms Henderson said.
"There's so many people this year doing it that didn't know about Sanfilippo ... so we need to do this event, we need to raise awareness and get funding to try to find a cure."
Ms Henderson said the 15,000 step target daunted some people so this year people can join up as a team and split the 15,000 steps a day between team members.
"Anyone who wants to be part of it can sign up," she said.
Skye's parents said they were grateful for the support they had already received, and would love more participants in Steps for Skye.
"We promised her love, happiness and quality of life when learning of her diagnosis, and that we would never give up on the hunt for a cure. We join in on the Steps for Skye campaign because we know every step takes us closer to a cure and fulfilling our promise to our beautiful little girl," Mr Robson said.