Her now four-year-old was diagnosed with Sanfilippo Syndrome Type A, a rare genetic condition that causes fatal-brain damage.

Up until August 2017, Mrs Tiefel and her husband Philip Tiefel had been in the dark as to why their son had fallen behind his twin-brother Dominic in development.

By two years of age, Lucas had already been fitted with hearing aids and glasses, had a double-hernia operation and had an adenoids, grommets and tonsils operation.

Mrs Tiefel said the diagnosis was one no family could prepare for.

Sanfilippo has no known cure or treatment and the life expectancy for children is just 12-20 years.

"We pretty much take every day as it comes," Mrs Tiefel said. "We're just trying to give Lucas as normal a childhood as possible."

The twin boys are enrolled in daycare at The Willows Early Learning Centre and plan to attend Calare Public School next year.

Lucas has a one-on-one aid at the day-care centre and Dominic has had the chance to step away as brother carer.

"Dom has his own group of friends and he needs that," Mrs Tiefel said.

"Lucas gets a lot of support from the other kids and teachers.

"He learnt to walk in the past 12 months but it is not your standard four-year-old. He is still very stumbly on his feet."

Mrs Tiefel said the cold weather isn't kind to the condition.

"Winter time kills us. He gets very chesty and has a lot of colds and miserable days," she said.

"Overall he is doing well though. He's a happy camper and I think he's determined not to let anything beat him."

The Tiefel family has inadvertently become a public face for the little-known syndrome, working to increase public knowledge while advocating for research.

Mrs Tiefel said the end goal is a cure, but the reality is that takes a lot of money and time.

"There's a number of trials taking place across the US and Europe which are all showing positive signs, there's been no long-term results though because more research is needed," she said.

Through support of family and friends the Tiefels have raised more than $27,000 for the Sanfilippo Children's Foundation, an organisation dedicated to treatment research.

Their efforts will get a boost this month when the 3^rd Orange Scouts hosts a movie fundraiser at Odeon 5 Cinema.

Mrs Tiefel said she was "blown away" and "completely humbled" when the mum of one of Lucas' daycare playmates, Liz Butcher, approached her with the plan.

"I can't be more thankful for their support. All the money goes into finding a cure," she said.

Mrs Tiefel said while being in the public eye isn't something her family would choose, if they can get more people talking about Sanfilippo it's something she's prepared to do.

"People see him and realise there's something wrong but struggle to understand how to ask questions about it," she said.

"I've always tried to be very proactive. If people want to know I will answer. It's not a nice conversation but it's something people need to be aware of."

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