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Skye’s story
September 5, 2025
Born with a very rare genetic condition called Sanfilippo Syndrome, Skye is one of less than 100 children with the disease in Australia.
As a degenerative disorder, over the years Skye has lost the ability to speak, and is slowly losing mobility amongst other cognitive issues.
For dad Mark, looking back at videos of Skye can be heartbreaking.
“Day in, day out, we don’t notice always the regression,” he says. “Someone showed me a video of her when she was probably about five years old, and she was serving me a plate of food.
“She was cracking pepper on that plate and she was talking a bit in the process. There is no way she could do that now.”
Mark describes the condition as similar to dementia. Receiving the diagnosis was extremely difficult.
“Obviously you think about the future watching them play sport, and all those sorts of things are now gone,” he says. “You go through that grieving process.”
At the same time, Skye’s mum Wanna suddenly lost her hearing which added to the pressure on the family.
Now ten years on from Skye’s diagnosis, and the family has been able to settle into a new normal.
“Once we were able to gather ourselves, we developed a strategy for her that was very, very simple,” Mark says. “Any decision we made for Skye was based through the lens of love, happiness, and the best quality of life that we could deliver.”
That’s where Very Special Kids has been crucial. Since 2016, the family regularly stay at the hospice at Very Special Kids House for respite and have created many lasting happy memories.
Living two hours from Melbourne in Ballarat, a trip to Very Special Kids House includes 24-hour medical care for Skye in a home-like setting while the family can stay in the family accommodation on site.
Those supports are integral to coping with life, Mark says.
We can happily leave Skye with the hospice staff knowing she’s going to have a ball.
Skye is particularly fond of the sensory activities and toys on offer.
The family has also made use of the holiday accommodation at Glen Osmond Farm in Woodend. An oasis packed with all the accessibility features needed that might prevent families from being able to travel.
“Initially, I think we underestimated the toll looking after a special needs kid takes,” Mark admits. “You never switch off. You never fully shut down.”
“Just being able to have that time just to recharge, so we can be at the top of our game to be able to look after her is so important, for us and for Skye.”
It’s been particularly useful for their teenage son Luke, who has been able to catch up with friends in Melbourne and get quality time with his parents that might not have been possible without respite assistance.
“Our son has to make quite a lot of sacrifices,” Mark says. “It plays that part in us being able to invest some time in him.”
Very Special Kids also has a dedicated sibling support program to connect others in similar situations.
Family wellbeing is paramount for Very Special Kids, Mark says.
Very Special Kids gives you that opportunity just to recharge your batteries but also know that we know Skye’s having fun.
