Forever hungry

27 March 2013

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With Australian obesity levels on the rise, now is the time to question whether being lazy and enjoying food is a good enough excuse to constantly overindulge. Most of us are guilty of the uncontrollable urge to engulf a few Big Macs after a night out, or to devour an entire box of barbecue shapes as an afternoon snack.

But imagine having a chromosomal disorder that prevents you from ever feeling full.

Eighteen-year-old, Brendan Vearing, has never felt the satisfaction of being full. His mother, Donna, shares her experiences of raising a child born with Prader Willi – the eternally hungry disorder.

Brendan“He has a chromosomal disorder, where the 15th chromosome in the brain is deleted. This is the chromosome that tells you your full. Brendan and other Prader Willi sufferers’ brains tell them 24/7 that they’re hungry because they are deprived of this mechanism,” she says.

It is estimated that Prader Willi has a prevalence of one in 25,000 births per year in Australia. A child with Prader-Willi syndrome has an excessive appetite, which often leads to obesity. This is due to both a preoccupation with food and a lower energy expenditure. The condition doesn’t just affect hunger but also intellect, stature and development.

This disability is far from easy to maintain. Donna has had to completely change her lifestyle to cater for Brendan’s needs.

“Everything you do you have to think about how you’re going to do it. You need to be organised and prepared for change if things don’t work out, especially in public.”

“Physically, we have a pantry that has a door with a fingerprint lock. Behind that we have our fridge, freezer and all our food, as well as the rubbish bins. We first tried a key and lock and had the keys tied around our necks. But we’d wake up at 2am with

Brendan’s hand under the pillow trying to get the key off our necks.”

 

It is incredible the length children and adults with this disorder will go to satisfy their uncontrollable hunger. Donna tells of stories where Brendan will steal food or they will find him in a skip bin eating scraps.

Simple daily tasks such as going to the supermarket or eating out at a restaurant for dinner are a much different experience to most families.

Brendan’s brother, Matthew, shares one of his many experiences of living with a sufferer of Prader Willi.

“One afternoon I was looking after Brendan, after getting into an argument over him not being allowed to eat more food he had a tantrum, found the farm bike and rode off. After searching, we found him in town, which is a thirty minute drive by car, trying to take flavoured milk and pies from the servo.”

While Prader Willi is a genetic disability that will never be cured, Donna explains how they deal with the symptoms of this condition.

“There is no treatment per say, I know that there is a lot of research happening, where they are looking at trying to activate the dormant chromosome. With a lot of disabilities you look at the signs and symptoms and deal with them. Because of Brendan’s slow development he has speech therapy, attends a Prader Willi clinic and see’s a psychiatrist.”

Unfortunately Brendan will never be independent. While Donna tries to make him feel as independent as possible by setting him chores such as making his bed, helping with the washing and aiding with cooking, she does worry about his future.

“Brendan wants to wash trucks, that’s his big career. This goal may never eventuate but we will certainly try hard for him. This comes down to services. Trying to get employees to take on people with disabilities is very hard. Our big struggle is trying to find him day placement when he leaves school. We don’t just want a babysitting service, but something that is beneficial and appropriate for him.”

Although it’s incurable, an understanding of Prader Willi has developed over the past decade and with research intensifying, it will continue to further knowledge of this rare disease.

Donna says while everyday can be a struggle, there are simple things that friends and family of sufferers can do to help.

“Get intervention started immediately and lock up your food straight away. Tap into the Prader Willi association in your area and get your support that way. No one knows as a parent what you’re going through unless you yourself have a child with the same disability.”

So next time I complain about feeling sick after overindulging, I’ll be grateful to know that I am physically able to feel this satisfaction.

For further information on Prader Willi visit The Prader Willi Association of Australia’s website.

(Photo of Brendan, Donna Vearing)

 

Bridget RollasonTHUMB Bridget Rollason is a third year Bachelor of Journalism student at La Trobe University and a member of the upstart team. Follow her on twitter @didgeriedoo