JOSIE Furfaro, her brother and her son, 15, all suffer from the same debilitating disease which too few people know about, she says.
Ms Furfaro, of West Hoxton, was diagnosed with Crohn's disease, an inflammatory bowel disease, in 1997.
Her son, Anthony, was diagnosed two years ago, at 13.
"It's genetic in our family but many more children are starting to be diagnosed with it now," she said.
"It's an embarrassing disease, so a lot of people weren't getting diagnosed or weren't seeking treatment, but if you don't take medication regularly it can get worse."
Ms Furfaro and her brother Angelo Romeo will hold a fund-raising ball, the Children with Crohn's Charity Event, at 6.30pm next Friday, May 23, at the Conca D'Oro Event Centre, 269 Belmore Road, Riverwood.
"We're very passionate about raising awareness of Crohn's. There are a lot of fund-raisers for breast cancer and other diseases but not a lot is done for Crohn's and not enough people understand what it is.
"Last year the ball raised more than $53,000. This year we hope to double that. All the money raised goes to the Children's Hospital at Randwick to help children and to fund cure research."
About 70,000 Australians live with the incurable disease, the cause of which is unknown.
More than 360 tickets to the event, which cost $120, have been sold already.
Details, bookings: Josie Furfaro, 0419 488 453 or Angelo Romeo, 0419 013 516.