By Alesha Capone
A Tarneit family is hoping to help spread awareness of a rare disorder.
Nine-year-old Makayla was diagnosed with Prader-Willi Syndrome (PWS) when just a few weeks old.
Common characteristics of the rare non-genetic disorder include small hands and feet, small stature, low body mass and hypotonia (weak muscles) at birth.
It is believed that about one in 10,000 to 20,000 children are born with the syndrome.
Makayla’s family is urging Wyndham residents to wear orange on Go Orange for PWS day on May 31.
Makayla’s mum, Ashley Hebden, said her daughter was born five weeks premature.
“She was born at the Werribee Mercy Hospital and two days later was transferred to the Royal Children’s Hospital,” Ms Hebden said.
“She ended up spending five weeks there – and that is when she was diagnosed with PWS.”
Ms Hebden said that a doctor at the Royal Children’s referred the family to the Prader-Willi Syndrome Association of Victoria and Prader-Willi Syndrome Australia.
“They have been really good,” Ms Hebden said. “They advocate for families and anyone with loved ones who have Prader-Willi Syndrome.”
Go Orange for PWS day is held annually to raise awareness and fundraise for Prader-Willi Syndrome Australia.
Details: go-orange.org.au
