Oliver Lees
Insatiable hunger, low muscle tone, impaired cognition and speech difficulties.
These are just some of the symptoms that can emerge as part of Prader-Willi Syndrome, a rare neurodevelopmental disorder that Sunbury resident Renee Gi Genova knows all too well.
Following her son Harvey’s diagnosis at birth almost four years ago, Renee has focused her efforts on raising awareness of this lesser-known condition.
“The biggest thing is the insatiable hunger, they just constantly feel hungry all the time,” she said.
“It’s not a condition that many people know about or advocate for like cancer or other well-known conditions.
“All I want is that as Harvey grows up, there are services in place to support him.”
Prader-Willi Syndrome, which affects approximately one in every 15,000 people, occurs when a small piece of genetic material from the 15th chromosome is missing or not working. It has a life expectancy of 37 years.
The condition affects the hypothalamus, which regulates the body’s hunger, thirst, temperature and pain.
Harvey is cared for by his parents Renee and James, and lives at home with two brothers Ashton and Hunter and sister Baea.
Renee said Harvey has defied some doctor’s expectations.
“He’s just absolutely wonderful, he brings so much joy to our lives,” she said.
“Everyone that meets him is taken aback by how much they love him, it’s hard to describe, he doesn’t even speak and people love him.”
Renee now volunteers as president of the Prader-Willi Syndrome Association of Victoria (PWSAV), which runs campaigns such as the 15 for 15 Challenge, where participants can challenge themselves in their personal life to raise funds for treatment.
Working with the Royal Children’s Hospital and Monash Children’s Hospital, PWSAV is hoping to implement a state-wide care plan, to identify elements of best care for the rare syndrome.
To learn more about Prader-Willi Syndrome, visit: praderwilli.org.au/
To donate to Renee’s 15 for 15 Challenge, visit:www.givenow.com.au/crowdraiser/public/harveysheroes_1
