Support for rare syndrome

Developing confidence: Bradley (second from right) celebrating with 21st birthday with his brother Jason, mum Rosemary (holding the cake), and co-parent Desiree.
Developing confidence: Bradley (second from right) celebrating with 21st birthday with his brother Jason, mum Rosemary (holding the cake), and co-parent Desiree.

Advertising feature

Prader-Willi Syndrome (PWS) is a rare condition, so finding a place that understands the intricacies of caring for someone with this syndrome can be tricky. 

Symptoms include mental and behavioural issues as well as obsessive eating patterns, so food intake needs to be monitored closely.

For Rosemary, whose son Bradley has the complex genetic condition that affects approximately one in every 20,000 people globally every year, meeting the needs for her son had brought her family close to breaking point.

“We had locked our house down, installed alarms and cameras and modified our work arrangements to minimise periods where Brad was alone. These brief periods always lead to increased anxiety and issues which required me to leave work to manage the situation,” she said.

While Bradley used to attend a day program, Rosemary said they found it nearly impossible to educate staff in PWS, which meant he often had access to food.

Plus, as Bradley had recently turned 21 and his two older siblings had moved out of home, he also wanted the same opportunities.

Rosemary said Interaction, an NDIS registered not for profit organisation, offered Bradley a trial in one of their PWS accommodation facilities. The respite prior to the move worked well to help the transition. 

“Bradley immediately connected with Nathan – now his housemate. Since moving in, there has been such a positive change. Bradley is proud to talk about how he can do his own laundry, and is able to participate actively in decisions about house activities,” she said.

“Bradley is growing into a confident young man, who for the first time in his life feels like he is ‘the same as his siblings’. He now engages with his parents and siblings, rather than seeing them as carers and minders. He is safe, content and able to lead a life of independence, whilst being supported by the social educators at Interaction.

For more than 25 years Interaction has been internationally recognised as providing best practice specialised accommodation supports and behaviour and allied health services to people with PWS, and their families and carers.

It is currently working with two German doctors in the PWS field to run a comprehensive training program to ensure specific staff at Interaction are fully trained on all aspects of PWS, and can apply those skills to the people in their care who have PWS, and their families.

If you’re looking for a better solution for someone with PWS, Rosemary advised to not be afraid of change.

”People with PWS need a lot of support and families can't always deliver what they really need.

“It is also necessary to reframe our thinking as our perception of life is often very different to their perception,” Rosemary said. 

This story Support for rare syndrome first appeared on Hills News.