Shaye has an acquired brain injury, which occurred when he was just four days old, and has vision and co-ordination problems, trouble walking, seizures and delayed learning.

But he has a friend in former INXS singer Ciaran Gribbin who is coming to Canberra on Sunday to star in a fundraising concert at The Abbey.

Shaye's mother Roslyn McKenzie said it had been a difficult few years for the family, including Shaye's sister Anastasia.

"It's been extremely tiring, extremely challenging and heartbreaking at times when you see he could do things a year ago that he can't do now," she said.

Mrs McKenzie and her husband are trying to raise $30,000 for their son's care, which will go into modifications to their north Canberra home, such as a climate control system to help prevent Shaye getting sick, and towards a guide dog who can also help alert them to Shaye's seizures.

She also wants to take Shaye to the United States to enrol in a program of medically-tested marijuana to control his seizures.

In the meantime life is a series of trips in and out of hospital and to doctors' offices.

It was during a trip to hospital, in Sydney, that Mrs McKenzie met former INXS singer Ciaran Gribbin at a performance in an Irish pub. Gribbin got to know Shaye's story and offered to help out in any way he could.

The result is the concert at The Abbey on Sunday.

"My heart goes out to her every time I see her and she's just a very strong woman," he told The Canberra Times.

"I'm a father myself and I know how tough it is to raise a family with a normal healthy child... So [the concert] is just a small gesture on my behalf."

Ciaran Gribbin performs at The Abbey in a fundraiser concert for Shaye. Sunday, November 23, 6.30pm. Tickets $20 from theabbey.com.au