But instead of receiving a clear diagnosis of what was wrong and a recommendation for appropriate treatment, it was the beginning of a four year journey that would see doctors baffled by a condition that has left Jahkye unable to walk or talk.

"There's nothing really they can do for him because they don’t know what they're treating," she said.

"It's just one of those things that will be a 'wait and see' because they haven't seen anything like it (before)."

As Jahkye gets older and his condition progresses, transporting him to his various medical appointments has become more and more difficult, and will soon require a specialised wheelchair-accessible vehicle, at a cost of up to $40,000.

Ms Fuzzard  is appealing to local businesses to donate goods and services to go towards a fundraising auction and raffle to help meet the cost and raise awareness for other families in the same situation.

"Lots of people are amazed when you tell them he doesn't have a diagnosis and they're amazed that there's lots of other kids out there that don’t have a diagnosis," she said. 

"I know it was a shock to us to hear that there's so many families out there that just don't know what's going on with their kids."

The fundraiser will be held from 6pm on August 29 at the Bendigo Club.

"It's $30 a ticket which includes a smorgasbord style meal and there'll be an auction and raffle and a lucky door prize," Ms Fuzzard said.

"The young man himself will be the star of the night I'm sure."

To offer support or contact the family visit the Jahkye's Journey facebook page.