Are you ready to join the Prader‐Willi Syndrome 15for15 Challenge?
It could be anything. Attempt 15 push‐ups a day for 15 days, go 15 days without coffee … or sing karaoke in the car for 15 days straight, as Renee Di Genova and her four‐year‐old son, Harvey, plan to do, while filming themselves for social media.
Renee is President of the Prader‐Willi Syndrome Association of Victoria (PWSA Vic), which partners with Monash Children’s Hospital to drive the #15for15 challenge, aimed at raising awareness and funds to support families dealing with this rare and difficult condition. It starts on May 17, running for 15 days, as part of Prader‐Willi Syndrome Awareness Month. She hopes the public will join in, no matter how. “Honestly, getting 15 people to donate 15 dollars would be a great ‘challenge’ from our point of view. Or challenging yourself to do something that you are uncomfortable with and sharing it on social media. It all helps.”
Prader‐Willi Syndrome (PWS) is an extremely tough road for children like Harvey and their families. It’s a multi‐stage non‐inherited genetic disorder that deletes or affects genes on the 15th chromosome in a part of the brain called the hypothalamus, which regulates many of the body’s vital systems. A child with the condition may struggle to walk or speak and is typically unable to understand when their stomach is full; therefore, constantly hungry, always looking to eat. “I’d like the community to understand that children, like my son, struggle every single day through endless hunger and other frustrations, yet still manage to be positive, emotionally intelligent, functioning people,” Renee said.
Only 1500 Australians and 400 Victorians live with Prader‐Willi Syndrome. Monash Children’s Hospital and other researchers, with financial and advocacy support from the PWSA Vic, are now making inroads into treatments for some of the specific conditions of the syndrome, as well as medicines for some of the symptoms. #15for15 can help assist that work.
Monash University Department of Paediatrics Associate Professor Gillian Nixon, who also works with PWS patients at Monash Children’s Hospital, said fund‐raising from #15for15 will fund the development of a vital state‐wide, evidence‐based model of care for children with the syndrome. The plan is to provide well‐coordinated and well communicated care. Children’s Hospital Clinician’s will work with community‐based professionals and access the best technologies to provide families with wholistic care rather than ‘condition specific’ clinics. It is designed to be implemented across Victoria.
“It’s a complex condition and our work is informed by the whole community, not just the medical community,” Gillian explained. “What is the best package of care? Families can learn from each other, such as dealing with insatiable appetite as a problem. How families deal with it every day, especially when the children are really young, can make a tremendous difference to their health and wellbeing.”