Oak Flats' Emma and Alexis Barling. Picture: GREG TOTMAN
Emma and Shane with Alexis.
First-time Oak Flats mum Emma Barling often encounters stares when she is out and about with her giggly 18-month-old daughter Alexis.
Despite her age and happy demeanour, little Alexis needs to be carried like a newborn because she has Angelman syndrome, a genetic disorder that delays all motor development and skills.
"People can be nasty, they stare when we're out in public," Mrs Barling said.
"They sometimes say 'She should be walking by now'.
"It's a bit rude but they don't know."
Alexis has not yet reached milestones such as rolling over or sitting up and she can not control the jerky movements her hands make.
Her parents hope she will master some skills like walking by the time she is five.
Mrs Barling said she and her husband Shane first knew something was wrong with Alexis when she was born and would not stop screaming. The couple were told she had meningitis but it took another five months before she was diagnosed with Angelman syndrome.
"She was getting older and she had no support in her limbs at all," Mrs Barling said.
After changing doctors, Mrs Barling was told Alexis could have either cerebral palsy or Angelman syndrome. Within a week, tests proved it was the latter.
"She's still perfect to us."
Mrs Barling said the syndrome affected chromosome 15, which in Alexis was not complete.
"She is one in 15,000 affected by a gene break-up," she said.
Alexis is a happy little soul, often heard giggling to herself.
"She is such a little trooper, she laughs even when they are giving her needles," Mrs Barling said.
Two fund-raisers have been organised for the Barling family so they can modify their home and buy vital equipment to support Alexis.
The Lake View Hotel Motel at Oak Flats will hold a family fun day on February 15 and the Lions Club will hold a fund-raising dinner and auction at Portofino Function Centre on March 15.
For more information visit The Alexis Barling Project Facebook page.