Darley’s Savannah Warwick is like any other five-year-old girl – she likes animals, dolls and cuddles.
Yet the Pentland Primary School pupil is one of about 15,000 children who are born with Prader-Willi syndrome (PWS) – and on Friday, May 30, her fellow pupils and teachers will don orange for PWS Awareness Day.
PWS is a rare genetic disorder that affects development and growth and can include skeletal abnormalities, short stature, eye problems and intellectual disability.
The colour orange represents appetite and hunger and symbolises something Savannah and others with PWS live with every day – a feeling of constant hunger.
Savannah’s dad, Ben, says her family feels “relatively blessed at the moment” as her symptoms are not so severe yet.
“Once it kicks in, it affects speech and learning, but for now we’re able to manage and work it out,” he said.
Savannah has a nightly growth hormone injection and regularly sees an orthopaedic
surgeon, physiotherapist, occupational therapist, speech therapist and endocronologist.
Despite her ongoing heath checks, her mum, Rachel, says Savannah is unwaveringly loving and “absolutely adorable”, extending a warm welcome to any new friend.
“She’ll meet people for the first time and she’ll just want to cuddle them. I don’t think I’ve ever seen her not like someone,” she said with a laugh. “We’d have tradies come to the house and she’d run up to them and wrap her arms around them.”
Savannah is doted on by her four older siblings, and while her dad keeps her health in check with walks on the treadmill and sport in the backyard, her older sister has a different approach.
“She teaches her to dance, imitating the dancers on TV and listening to pop music,” Rachel said. “She’s into her Top 40 music and she really gets into the dancing.”
While there is no treatment for PWS, Ben says they will always support Savannah and hope that her fellow Pentland Primary School pupils will do the same on GO Orange Day.
The pupils can be as orange as they like, wearing an orange ribbon or a full-on ensemble, and bringing along a gold-coin donation for the PWS Association of Australia.
“We think it’ll be great if the school comes together to show their support for Savannah and others with PWS,” Rachel said.
For more information, visit www.pws.asn.au
