Alexis Barling, 1, with mum Emma and dad Shane, has Angelman's Syndrome. There will be a fundraiser at the Lakeview Hotel for her on February 15. Picture: DYLAN ROBINSON
Alexis Barling, 1, with mum Emma and dad Shane, has Angelman's Syndrome. There will be a fundraiser at the Lakeview Hotel for her on February 15. Picture: DYLAN ROBINSON
DESPITE the challenges life has thrown her way, Emma Barling describes her 18-month-old daughter Alexis as a "happy little trooper".
Two fund-raisers will take place to provide valuable assistance for her family.
Oak Flats resident Alexis has Angelman Syndrome, a genetic disorder that delays all motor development and skills.
The toddler is not yet able to roll over or sit up and is unable to control the jerky movements her hands make.
Mrs Barling said the syndrome affected chromosome 15, which in Alexis was not complete, and that she was one in 15,000 affected by a gene break-up.
"She can't sit properly in her pram," Mrs Barling said.
"At the moment you can't tell she's sick (when out in public), but she will need to be in a wheelchair; they'll fit her for that when she's about four."
Mrs Barling also said her daughter was only able to sleep for four to five hours at night.
"She's a happy little trooper though," she said.
"Even when she's at the hospital and they're doing tests, she's always giggling at everything."
Alexis is Mrs Barling and husband Shane's first child.
"We've been told it can be passed on again," Mrs Barling said.
"If we have another child we have to have tests done."
To assist the family financially, friends and relatives as well as the Oak Flats Lions Club have established The Alexis Barling Project.
Two fund-raisers have been organised so the Barlings can modify their home and buy equipment.
This includes an adaptable bathtub, wheelchairs, car seats and renovations.
The Lakeview Hotel Motel, Oak Flats will host a family fun day/barbecue on February 15 from 4pm-9pm and the Lions Club will also hold a fund-raising dinner and auction at Portofino Function Centre on March 15.
"It's unbelievable and we're so thankful; I can't believe even how much the Facebook page took off," Mrs Barling said.
Lions' goal is to raise $100,000 from fund-raising.
