But to her parents Mark and Wanna and brother Luke, the Very Special Kids Piggy Bank also represents their respite from caring for Skye, who has the very rare Sanfilippo Syndrome.

The condition causes waste to build up in Skye’s organs, particularly her brain, leading to brain damage. Most Sanfilippo Syndrome sufferers do not survive past their teens.

“Very Special Kids is one organisation that provides us with a huge amount of support,” Mr Robson said.

“The hospice provides us with an option to stay in Melbourne and also an opportunity to take a break from the 24 hour care that Skye requires, allowing us to recharge our batteries and spend some quality time with our son Luke.

“To have access to all the facilities and services that Very Special Kids offer is something that provides us with so much support, support that we cannot express our gratitude for adequately in words.”

The giant piggy bank was in town on the weekend as part of a statewide trip to raise $1 million for children with life-threatening conditions.

Community fundraising events were held at the Bridge Mall and the Blue Bell Hotel.

Very Special Kids chief executive officer Michael Wasley said they support 36 families in the Grampians region and more than 900 across Victoria who are caring for children with life-threatening conditions.

A family support practitioner in Ballarat also provides outreach support, including counselling and advocacy, and coordinates local programs and events giving families the chance to meet and share information and experiences.

Very Special Kids also provide 24-hour nursing care at Victoria’s only children’s hospice.

“Each year it costs over $7 million to operate Very Special Kids,” Mr Wasley said.

“Without donations from our community we would not be able to continue caring for these brave families.”

People can also donate to Very Special Kids or buy merchandise online at piggybankappeal.org.au.