But after the boys began to suffer seizures and lose the ability to make eye contact, Ms Watson said she struggled even to obtain a diagnosis.

"No one could really say for sure whether they were seizures or not and then gradually they just diminished in developing, so it was pretty much from about four months old I could really see there was something changing in them, something was wrong," she said.

"It wasn't until Hamish was about six months old that there was a test available and he was able to be diagnosed with the disease and with his diagnosis William, his older brother, was able to be diagnosed with the same condition."

The family's difficult journey has been made somewhat easier by the support of Very Special Kids, which despite limited resources, has been able to provide some valuable breathing space.

"It's a lot of work indeed to look after the boys and so I guess where Very Special Kids steps into it for us is we were offered their services through our pediatrician at the Royal Children's Hospital and we were able to tap into three weeks a year to have respite with the organisation and that has just been like an absolute godsend," she said.

But with only 12 beds available at any one time throughout the state, Ms Watson would like to see a dedicated support worker based in Bendigo, so other families can benefit from the assistance she received.

"Hopefully one day my aim would be to see a Very Special Kids hospice up here in Bendigo to service regional Victoria," she said.

That is where a group of Bendigo cyclists have stepped in, turning the efforts of their annual charity fundraiser towards raising $100,000 to help make Ms Watson's vision a reality.

This year the team has set the ambitious goal of circumnavigating Tasmania.

Cyclist Andy Hoare said he was somewhat daunted by the epic ride, but not by the ambitious fundraising target.

“The ride’s about 800 kilometres and it’s over seven days which isn’t too bad distance-wise, that’s quite achievable, however the kicker is in those seven days there’s actually 12.5 metres of vertical climb, so to put things in perspective, that’s like riding over Mount Alexander four times a day, every day,” he said.

“We think Very Special Kids is an absolutely fantastic organisation and ultimately if we can raise enough money they’ll help families in the Bendigo area even more.

“We’ve met with some of the families and we’re convinced that we’ve picked a very worthy charity to make the effort that we’re going to and hopefully raise a six figure sum of money to support them.”

Along with the bike ride, the group is holding a charity dinner and auction at Symes Motors BMW in High Street on November 14.

For tickets to the dinner call Geoff O'Sullivan on 0414 414 020.