Vanessa and James Scott's lives were turned upside down in 2000 when their energetic son Max, then aged six, was diagnosed with Sanfilippo syndrome, a degenerative condition that will eventually cut his life short.

"As a sixyearold, he was always running around and being active, and he could speak and read," Mrs Scott said.

"But by the end of the first year after he was diagnosed, he lost most of that."

Sanfilippo syndrome means Max lacks the enzyme needed to break down mucopolysaccharidoses waste, resulting in a build-up of waste in his cells. Max, who is now 16, is confined to a wheelchair and over time will lose the ability to talk and eat.

"Because the disease is so rare, everything for Max is so full on," Mrs Scott said.

"The care he needs is so complex.

Because it affects the brain, there are a lot of behaviour issues with Max as well."

His behaviour is often aggressive and violent.

There are two other children in the family and Max requires 24-hour care.

He attends Port Phillip Special School in Port Melbourne, but there may come a time when his condition prevents him from going there.

Max's family and friends have banded together to organise a fund-raiser to help the family pay for the equipment and care they need to make his life more comfortable.

As Max's condition worsens, he will require more equipment and care worth thousands of dollars.

"For example, we recently had to modify our car to make it wheelchair-accessible," Mrs Scott said.

Mrs Scott is asking local businesses to donate money for sponsorship or items that could be sold in an auction. "We seem to be getting plenty of numbers for people attending, but it would be great to get local businesses to become involved as well."

The fund-raiser will be on July 31 at the Red Scooter in Balaclava from 7.30pm. There will be five hours of entertainment, with live music and guest speakers.

For information or to donate, call Vanessa Scott, 0439968705 or email wildaboutmax@gmail.com,

or call Lions Club president Les Tarczon, 0412778425.