Harvey was born prematurely at 33 weeks gestation and was soon diagnosed with Prader-Willi Syndrome (PWS).
PWS affects 1 in 15,000 births and is considered a rare, complex and multi-stage genetic condition. It primarily affects the part of the brain called the hypothalamus, the area responsible for regulating all the systems in our body and their functions including hunger, thirst, temperature and pain receptors.
People living with PWS exhibit high anxiety, complex and sometimes challenging behaviours and various degrees of cognitive disfunction. It also affects learning, physical, mental and emotional help and has an impact on a person’s social relationships.
There is no known cure for PWS but current research suggests that the best way to ensure the best quality of life for people living with PWS is with careful, personalised management of symptoms, allied health intervention and a quality support network.
Harvey lives with his parents, and has a half-brother and sister, along with a little brother, 2-year-old Hunter.
Harvey’s mum Renee is his full-time carer, and the President of the Prader-Willi Syndrome Association of Victoria (PWSA Victoria). It is through her role with PWSA Victoria that the Monash Health Foundation has come to know Harvey and his family.
As a parent of a child with a diagnosis of PWS, Renee is incredibly passionate about raising awareness around the disorder, along with advocating for additional supports so that other families can access what they need to ensure better outcomes for their children.
“Despite Harvey facing challenges daily, we’re determined to focus on the positives and push for more support not only for him, but for the other families across the state impacted by PWS,” says Renee.
“He’s an incredibly generous, resilient and caring little boy, his smile lights up the room.”
One of the most concerning elements of Harvey’s condition is that his body doesn’t regulate things most of us take for granted, such as hunger and thirst signals. Harvey often feels like he is in a state of all-consuming intense hunger, which can be very overwhelming.
People living with PWS also face difficulties with social interactions and emotional regulation – this can of course greatly impact their mental health.
Harvey also has a very high pain threshold, meaning that for those unfamiliar with him, it can be difficult to ensure his safety.
“This is why the work we do through the Prader-Willi Syndrome Association of Victoria (PWSA Victoria) is crucial. Raising awareness of PWS and its complexities is at the core of what we do – especially for families facing a new diagnosis,” explains Renee.
Through peer support, education, advocacy and enhanced social and traditional media coverage since 2013, the organisation is bringing the level of awareness around PWS to new heights.
The PWS Victoria ‘PWS Go Orange’ campaign has united communities around the world by delegating the last Friday in May to be PWS Awareness Day. In addition, PWS Victoria have recruited AFL legend David Rhys-Jones (whose son lives with PWS) to amplify this campaign by championing the 15 for 15 Challenge in 2018.
“Support and education are two of the most important facets of what we do at PWSA Victoria,” says Renee.
“The more people understand about PWS and how they can support those living with the disorder, the better the quality of life can be for these people – and that is our number one priority.”
To learn more about Prader-Willi Syndrome, and how you can support children like Harvey, please visit https://pwsavic.org.au/
Harvey (right) with his family
