A mother has shared her pains concerning her son who is suffering from a rare disorder causing him to constantly get hungry.
A 19-year-old, from Sydney has Prader-Willi Syndrome (PWS), a rare congenital disorder characterised by a ferocious appetite and an obsessive compulsion to eat can not stop adding weight because of the disorder as he consumes too much food.
Henry Szaraz is now weighing over 200 kilograms as his mother, Virginia worries of what will become of his son’s future due to the disorder. She now padlocks the food cupboards to stop him from not eating.
Relating her experience to news men, Virginia said the job of caring for Henry 24 hours which includes bathing him in the morning, ferrying him to physical therapy appointments during the day, and locking the cupboards and fridge before bed at night is not an easy one.
Virginia quit her job as a disability-support nurse to bring up Henry’s older brother more than 20 years ago. The mother-of-three, said it was only a matter of time before Henry also developed diabetes on top of the other complications.
‘I’m 55 and caring for Henry on my own. There are no holidays,’ Virginia told Daily Mail Australia.
‘In every aspect of his life he needs to be supervised.
‘I need to assess whether I have locked the cupboard or the fridge before I go to the loo.
‘I might be gone for a couple of minutes and come back to find an empty jar of peanut butter under his bed with a teaspoon in it.’
Despite the learning difficulties caused by the disorder, Henry was as crafty as anyone when it came to food, she said.
‘He doesn’t miss a trick. I am always being outsmarted.
‘When it comes to food and things like that it is a lifelong battle.’
After Henry was born, the solo mother no longer had the option to return to work and making ends meet has been a struggle ever since.
‘In our financial situation you just can’t save. There are always medical costs,’ she said.
Henry is a staunch supporter of the South Sydney Rabbitohs rugby league club – his favourite player is Sam Burgess – and is a much-loved character in the community of Asquith, North Sydney.
‘He’s very loved and recognised in the local community,’ Virginia said.
‘Wherever we go people will come up and speak to us.
‘He’s such a friendly kind of person. He’s always got a big smile on his face and even plays Santa at the local creche.
‘Because he’s such a great smiley chap, he’s well loved.’ The family has opened a Gofundme account to assist in caring for the boy.