Woodstock Show Pop Up Pantry proceeds to go to Hope for Lucas campaign

BRAVE SMILES: Rohanne and Philip Tiefel with their twin three-year-old sons Dominic and Lucas have launched the Hope for Lucas campaign for research into Sanfilippo Syndrome. Photo: KIKI HOPCRAFT.

BRAVE SMILES: Rohanne and Philip Tiefel with their twin three-year-old sons Dominic and Lucas have launched the Hope for Lucas campaign for research into Sanfilippo Syndrome. Photo: KIKI HOPCRAFT.

Continuing with the theme Make it, Bake it, Grow it, Show it, the Woodstock Memorial Show to be held on Sunday, September 2 will have its very own ‘Pop Up Pantry’.

The stall will be filled with handmade relishes, jams, sauces, home grown fruit, vegetables, eggs, plants and cuttings all cooked and grown by the Woodstock community.

The stall will also include local honey donated by Woodstock Honey and Millamolong Cordial, donated by Milla Cordial. 

Close to the Woodstock Show committee’s hearts, all the proceeds from the ‘Pop Up Pantry’ will go directly to the Hope for Lucas campaign, Sanfilippo Children’s Foundation, to support a very special local family.

Rohanne and Phil Tiefel’s son, Lucas was diagnosed with Sanfilippo last year, a rare and fatal condition in children and there is currently no effective treatment or cure.

But there is always hope and with the help of the Woodstock community it can make it a reality, so visit the ‘Pop Up Pantry’ on September 2, 2018, and support a very worthy cause, located in the front of the Walli Hall and buy a relish or two!

Stay up to date with developments follow the Woodstock Show on Facebook @Woodstock Memorial Show Inc or on Instagram woodstockshow #bestlittlecountryshow

Since the diagnosis last year the twins had their third birthdays in December and the family started the Hope for Lucas campaign to raise money for research into finding a cure.

“Lucas and I don’t get a cent from the donations,” mum Rohanne said.

“Every cent goes toward the research.

“There are trials currently under way worldwide.

“They are looking at gene therapies.

“But currently there is no magic wand, no magic pill you can give to your kid that says ‘you are cured.’

“It’s an unknown now.

“We don’t have a time frame of how long he will live.

“The standard milestones are out.

“We ride his rollercoaster.”

Mrs Tiefel said she planned to try to make Lucas’ life as normal as possible.

“My full intention for him is to have a full, healthy lifestyle that every other kid of his age has,” she said.

That included daycare, pre-school and regular schooling where possible.

She said the syndrome was so rare that only about 75-100 people had it in Australia.

That’s just one in 70,000 people.

The Sanfilippo Children’s Foundation website www.sanfilippo.org.au said it was an inherited condition caused by an enzyme deficiency.

“The lack of enzyme prevents the body from going through its natural recycling process, causing cellular malfunction,” it said.

“Over time brain cells fill up with waste that the body is unable to process.

“As the brain gets progressively damaged, children experience hyperactivity, sleeplessness, loss of speech and cognitive skills, mental retardation, cardiac issues, seizures, loss of mobility, dementia and finally death, usually before adulthood.”

Mrs Tiefel said she and her husband carried the recessive gene that could lead to the inherited disorder – something they were completely unaware of until they had children.

Now they are searching to see if any descendants had the disease or similar.

You can donate at www.hopeforlucas.com.au

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