By Lachlan Ellis<\/p>\n
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.<\/p>\n
\u2018Steps for Skye\u2019 was started in 2020 by carers Teghan Henderson and Bree Pellow, who care for 12-year-old Skye Robson, who has Sanfilippo syndrome.<\/p>\n
The Robson\u2019s are from Ballarat but are familiar faces at the Dunnstown Football Netball Club, where Skye\u2019s older brother plays football.<\/p>\n
Sanfilippo syndrome causes fatal brain damage, and as those affected experience increasing neurological decline, they often lose the ability to walk.<\/p>\n
There is currently no approved treatment or cure for Sanfilippo syndrome, and life expectancy for children with the condition is just 12 \u2013 20 years.<\/p>\n
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.<\/p>\n
Ms Henderson has been caring for Skye since she was diagnosed 8 years ago, and said it was difficult watching Skye\u2019s condition deteriorate.<\/p>\n
\u201cIt\u2019s a very cruel disease, they call it a childhood dementia. It\u2019s very rare, Skye\u2019s the only girl in the Ballarat area with the disease, the others in Victoria are in Melbourne basically,\u201d Ms Henderson told the Moorabool News.<\/p>\n
\u201cWe\u2019ve definitely seen her change over the years. It\u2019s been hard\u2026especially lately, she\u2019s regressing a bit more. She\u2019s no longer talking, and her legs are getting a bit stiffer\u2026she needs to be meal-assisted too. It\u2019s 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\u2019t be a part of the walking aspect, to donate to the cause.\u201d<\/p>\n
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.<\/p>\n
Skye\u2019s 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.<\/p>\n
“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 \u2018Steps for Skye\u2019 campaign because we know every step takes us closer to a cure and fulfilling our promise to our beautiful little girl,\u201d Mr Robson said.<\/p>\n
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.<\/p>\n
To register to join the challenge or to donate, visit www.sanfilippo.org.au\/stepsforskye.<\/p>\n","protected":false},"excerpt":{"rendered":"
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. \u2018Steps for Skye\u2019 was started in 2020 by carers Teghan Henderson and Bree Pellow, who care for 12-year-old Skye Robson, who has Sanfilippo […]<\/p>\n