The Skye’s the limit

By Lachlan Ellis

A community fitness and fundraising challenge is back for its third year, raising funds for a terminal illness in the name of a local girl affected by the condition.

‘Steps for Skye’ was started in 2020 by carers Teghan Henderson and Bree Pellow, who care for 12-year-old Skye Robson, who has Sanfilippo syndrome.

The Robson’s are from Ballarat but are familiar faces at the Dunnstown Football Netball Club, where Skye’s older brother plays football.

Sanfilippo syndrome causes fatal brain damage, and as those affected experience increasing neurological decline, they often lose the ability to walk.

There is currently no approved treatment or cure for Sanfilippo syndrome, and life expectancy for children with the condition is just 12 – 20 years.

In the first year, Steps for Skye rallied 15 walkers to each walk 15,000 steps a day for the entire month of August, raising $25,000 for Sanfilippo research.

Ms Henderson has been caring for Skye since she was diagnosed 8 years ago, and said it was difficult watching Skye’s condition deteriorate.

“It’s a very cruel disease, they call it a childhood dementia. It’s very rare, Skye’s the only girl in the Ballarat area with the disease, the others in Victoria are in Melbourne basically,” Ms Henderson told the Moorabool News.

“We’ve definitely seen her change over the years. It’s been hard…especially lately, she’s regressing a bit more. She’s no longer talking, and her legs are getting a bit stiffer…she needs to be meal-assisted too. It’s difficult to see for sure. It would be great to have as many people as possible be part of Steps for Skye this year, or if they can’t be a part of the walking aspect, to donate to the cause.”

Last year Steps for Skye raised $25,000, and this year, the hope is for a bigger and better event, with the fundraising goal doubled to $50,000.

Skye’s mum and dad, Daeng and Mark Robson, are fighting on for a cure for Sanfilippo syndrome, and hope to see more locals out walking for the cause this year.

“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.

One hundred per cent of donations go towards funding vital research projects that show potential to halt disease progression, repair damage caused by the condition, or improve the quality of life for children suffering from Sanfilippo syndrome.

To register to join the challenge or to donate, visit www.sanfilippo.org.au/stepsforskye.