Horsham's Frawley family fundraise for Cowden Syndrome

Mrs Frawley's husband Anthony and two of their children have Cowden Syndrome, a hereditary condition which causes tissue overgrowth resulting in tumors.

Although most tumors are benign, the condition significantly increases the risk of a range of cancers.

One in 200,000 people are diagnosed with Cowden Syndrome.

There is no cure and sufferers sometimes need to have multiple operations in their lifetimes to remove tumours and a range of annual screens to ensure no tumors are cancerous.

The Frawleys knew something was wrong when their son Connor stopped gaining weight at 12 weeks of age.

After a whirlwind of visits to general practitioners, paediatricians and the Royal Children's Hospital, a lump was found on Connor's liver.

Mrs Frawley said at first doctors thought their son had cancer but after some tests it was found to be benign.

However, the weight gain issue remained.

"My husband mentioned that a lot of family members had passed away from cancer and had had multiple tumours in their lifetime," she said.

Mrs Frawley said that was when Connor was tested for Cowden Syndrome.

Connor tested positive for the condition.

Mr Frawley and their daughter Mia, 5, also tested positive for the condition.

Their youngest son Jeremy, six months, is being tested for the syndrome.

Mrs Frawley said it is very likely he would also test positive.

"My husband has the gene and there's a 50 per cent chance he'll pass it on," she said.

Mrs Frawley said her husband had regular screens to catch any cancer early.

Mia and Connor are both developmentally delayed and see a range of specialists including early intervention workers, physio, speech therapists and paediatricians.

Mrs Frawley has decided to do everything she can to raise money and awareness for Cowden Syndrome.

She said her goal was to eventually start a foundation for Cowden Syndrome.

There is currently no sole foundation in Australia for sufferers of the condition, although the condition gets recognised as part of Rare Disease Day Australia," she said.

"I'd love to find a cure. I want to get it to a stage similar to Down Syndrome where you can test while you're pregnant, so you're prepared," she said.

Her first event is a trivia night on February 28 at Westside Taberet Horsham.

Member for Lowan Emma Kealy will be the guest speaker on the night and there will be prizes, a raffle and a silent auction.

Mrs Frawley said singles or teams were welcome.

She said people could visit her Facebook page: Raising Hope - Awareness for Cowden Syndrome for more information.

Mrs Frawley said people could call 0468 487 785 or email angelafrawley76@gmail.com to sign up for the trivia night.