Unlocking hope for children with a cruel disease

Prader-Willi Research Foundation Australia
Honest. Warm. Brave

Kathlene Jones’s daughter was born with Prader-Willi Syndrome (PWS), which causes physical disability, cognitive impairment, crippling emotional imbalance, obesity and a life expectancy of just thirty years.

But she is determined to help improve treatment and support for all children and adults with the cruel genetic disease and founded the Prader-Willi Research Foundation Australia.

People with PWS are among the most excluded and vulnerable of people with a disability, and their families also suffer extreme social and economic exclusion.

Part of Kathlene’s mission is to highlight their potential and show how “beautiful and amazing” the children are.

“This genuine pride, affection and support give our children confidence and self-esteem to participate and build friendships,” she says.

Kathlene feels privileged and honoured to be voted a Westfield Local Hero.

“It’s great the community is behind us,” she says.

“Our kids have so much potential. When we can support them to get their Prader-Willi symptoms better managed, you can see all of the beauty the child brings.”

So complex is the condition that caring for a child or adult with PWS is considered harder than looking after someone with disabilities caused by stroke, brain injury or dementia.

One of the biggest challenges is that the children can become critically ill without showing any signs of illness.

Kathlene’s current focus is on implementing a healthcare model to help the estimated two thousand Australian families living with PWS. This will help all doctors who treat the children better understand the complexities of their condition.

Westfield Local Heroes are nominated and voted for by their communities, with the three top finalists per Westfield centre each awarded a $10,000 grant for their affiliated organisation.

Prader-Willi Research Foundation Australia’s will put its grant towards work on the new healthcare model.

“The ideal long-term treatment is gene therapy that will enable the children to function without all of the challenges,” Kathlene says. “In the meantime, our kids could be getting a lot better preventative care. This provides an immediate improvement in quality of life for the individual with PWS as well as reduced stress and medical care burden for their family.”

__For further information on the Westfield Local Heroes program, click here. __