Skye, 11, was diagnosed with the rare genetic disease when she was five and her family were concerned she was developing more slowly than her peers.

What they thought was a developmental delay was in fact a terminal degenerative disease, described as childhood Alzheimers or dementia, with no treatment or cure, that usually takes the lives of its victims in their teenage years.

Teghan Henderson became one of Skye's carers soon after her diagnosis, providing assistance and respite for her parents.

"She's going well but we've noticed in the past 12 months she's started to deteriorate," Ms Henderson said.

"Her speech is going downhill ... we've noticed her legs are becoming more stiff so she'll be running around and fall over nothing ... and she's having more difficulty swallowing so is on a soft food diet.

"When I first met her we used to sing Frozen songs together, she used to love playing doctors and was so engaging and talkative - now she will try and speak but some words are not clear. It's very hard to see her decline."

Despite the challenges, Ms Henderson said Skye was a very happy child.

"She used to do a lot of hitting and kicking but that side of it has mellowed out a bit. She is very happy these days, does a lot of laughing, loves being around people she knows and finds a lot of things funny - watching Shrek, trampolines, running around."

Last year Ms Henderson and Bree Pellow decided to raise money for the Sanfilippo Children's Foundation for research toward treatment and cure for the cruel disease and created Steps for Skye, a challenge for participants to walk 15,000 steps a day during August.

The inaugural event had 15 participants and, with three days to go, there are already 30 people signed up to be part of the 2021 Steps for Skye and $3800 in donations.

The pair settled on the concept of a step challenge because people could count it as part of their exercise during COVID lockdown and it takes the same form this year.

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"For me last year the 15,000 steps a day was about 12km a day," she said. "Because we had lockdown my hours at work (at Pinarc) were reduced which made it easier to fit in. This year I'm back at work full time so it might be tricky, I'll have to get up early to do it.

"The money we raise goes towards research because there's no cure for Sanfilippo at this stage."

There are fewer than 100 children in Australia with Sanfilippo and Skye is the only child in Ballarat with the genetic disease.

Anyone wanting to take part in Steps for Skye or donate to the cause can click here

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