But a night of entertainment at the Red Scooter in Balaclava last month has raised more than $20,000 for his care needs in a bid to make his life more comfortable.

The 16-year-old has Sanfilippo syndrome and is now confined to a wheelchair, requiring 24-hour care.

While his parents, Vanessa and James Scott, are chuffed with the support from the community, they are determined to find a cure for the illness which has robbed their son of the ability to write, walk and talk.

Mrs Scott has developed a not-for-profit organisation, Wild about Max, to encourage research into a cure and to help children with Sanfilippo syndrome "achieve their wildest dreams by fostering and promoting community awareness of rare genetic diseases".

Sunshine Lions Club president Les Tarczon was happy to help out the Scott family, which includes two other children.

"For Max, we wanted to take the pressure off the parents," he said. "We look after our local people, helping with events, creating public awareness and providing service."

Mrs Scott said service systems needed to be improved for children with life-threatening disabilities.

"These children shouldn't have to go on waiting lists for services or equipment.

"There needs to be a holistic approach from government, a centralised system of data so the parents don't have to continually complete forms. Carers need appropriate breaks, and respite options are very limited, particularly in the west.

"We would love to see a new respite house built for these young."

About 190 guests attended the fund-raiser. They included Dancing with the Stars judge Mark Wilson, who has offered his full support for Wild about Max.

Sanfilippo syndrome affects only one in 66,000 people and few who have it live beyond their late teens.

For information or to donate, call Vanessa Scott on 0439968705 or visit www.wildaboutmax.org.au