Stepping up for childhood dementia

Two carers are taking part in a mammoth walking fundraiser again this year, and are calling on the community to challenge themselves and raise funds for a great cause.

‘Steps for Skye’ was started in 2020 by two incredible carers, to help fund research into Sanfilippo syndrome, a devastating form of childhood dementia.

Teghan Henderson and Bree Pellow care for 13-year-old Skye Robson, who has Sanfilippo syndrome.

The two set themselves a community fitness and fundraising challenge inspired by Skye, rallying friends and family to each walk 15,000 steps per day for the entire month of August.

Skye Robson and her family are familiar faces around the Dunnstown Football Netball Club, with her older brother playing footy for the Towners.

No approved cure or treatment currently exists for Sanfilippo syndrome, and life expectancy for those with the condition is around 12 to 20 years, making every dollar raised vital.

Ms Henderson said it was incredible how much people had gotten behind Steps for Skye, and hoped the cause would continue to grow this year.

“In 2020 we had 15 walkers, and in 2022 over 110 people signed up to take part. This year we hope even more people will get involved in Steps for Skye and challenge themselves to get fit and help raise funds,” she said.

“The reality is our beautiful Skye is slowly being taken away from us each day by Sanfilippo syndrome. It is a cruel disease, and we want to help find a cure so others don’t need to experience the pain Skye and her loved ones are going through.”

Skye’s mum and dad, Daeng and Mark Robson, are very grateful for the support they have already received and would love to have more team members walking alongside them.

“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. The ‘Steps for Skye’ campaign is so important because we know every step takes us closer to a cure and fulfilling our promise to our beautiful little girl.” Mr Robson said.

Since its inception in 2013, the Sanfilippo Children’s Foundation has directed over $7.5 million to medical research across more than 40 research projects, in the search for treatment for Sanfilippo syndrome. Community and family support has been integral to this, and to giving families like Skye’s hope.

Register now to join in the challenge or donate at www.sanfilippo.org.au/stepsforskye.