2017
Rare Disease Day Ambassador
Rare Disease DAY is about raising awareness of , and supporting locals with rare diseases . If you have any enquiries or you would like to help out , on the day or in a more ongoing role please contact Meagan on 0419 545 521 . Registrations are online www . rarefriends . org
Liam , who turns five in February , has a diagnosis of Prader-Willi Syndrome . Prader-Willi syndrome ( PWS ) is a genetic disorder that occurs in approximately one out of every 15,000 births . PWS affects males and females with equal frequency and affects all races and ethnicities . PWS is recognized as the most common genetic cause of lifethreatening childhood obesity .
Growth hormone deficiency is present in almost all children and many adults with PWS , so Liam has daily injections of growth hormone . Liam has already endured six surgeries in his short life ; in the first few years of his life he spent about as much time in hospital as he did at home . All of the typical milestones were delayed mainly due to his low muscle tone .
Currently , there is no cure for Prader- Willi syndrome , and most research to date has been targeted towards treating specific symptoms For many individuals affected by the disorder , the elimination of some of the most difficult aspects of the syndrome , such as the insatiable appetite and obesity , would represent a significant improvement in quality of life and the ability to live independently .
Liam hasn ’ t let this rocky start slow him down ; he has a huge personality and a flare for performance . At his tender age , he has two dance concerts and several eisteddfods under his belt . His love of the stage has seen him enter the world of modelling and he loves nothing better than donning a suit and heading to the races for Fashions on the Field .
He was awarded 2016 Junior Tween Model Face of Summer Australia in a recent competition . His other love is V8 Supercars where he spends many a weekend at the track , trying to have as many cuddles as he can with his hero Craig Lowndes and Erebus team owner , Betty .
Throughout the course of his life , Liam will face many more challenges than the average person , but he faces them with his cheeky grin and good attitude .
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