'Your son will be dead by the time he's a teenager'

THIS was the devastating news that doctors delivered to this Northern Rivers family. But now they're on a mission to raise awareness.

FAMILY LOVE: Ten-month-old Tommy Johnston has a terminal disease called Niemann-Pick Type C and his family wants to raise awareness. He is pictured with parents Pip and Paul Johnston and sisters Jess and Annabel in Tenterfield.

TOMMY is 10 months old and he's a happy, little kid, his mother Pip Johnston said.

Five months ago, parents Paul and Pip Johnston were told by doctors that Tommy had Niemann-Pick Type C.

Like most Australians, they had never heard of the genetic disease.

"They tell you - your son will be dead by the time he's a teenager. Go home and enjoy him," Pip said.

The Johnstons live in Tenterfield and have property in Woodenbong. Paul was born and raised in Bonalbo and was a vet in Casino for many years.

The family plan to move back to the area soon. They have three children, Jess, 7, Annabel, 4, and Tommy.

Tommy needs more time. NPCD is a disease with a slow 10-year decline.

"It's pretty crap," Pip said.

"It starts with the eyes, where they have abnormal eye movements, then they have swallowing issues and eventually die because they can't breathe."

Tommy's grandmother Gwenda Johnston, from Bonalbo, has nine grandchildren and Tommy is the youngest.

"If you saw Tommy, you'd think nothing was wrong with him," Gwenda said.

"That's the hard part.

"It's one of those things. The odds of winning the lottery are greater."

The Johnstons want to raise awareness of NPCD and the usually private family is speaking out about Tommy's condition to help find a cure.

"If not for Tommy, for another kid in the future," Pip said.

She recently returned from a NPCD conference in the United Kingdom where the disease is more well known and research is funded.

They have written to Member for Page Kevin Hogan to ask if there is any Australian Government funding for the disease.

Tommy is the youngest in Australia with NPCD and the oldest is a 62-year-old woman, Pip said.

"Treatment slows the disease," she said but the earlier it is diagnosed the chances of living a long life are reduced.

The family is getting its other children tested.