Please accept my boy, urges mother of child with PWS

A rare genetic disorder called Prader-Willi Syndrome (PWS) means his brain never tells him he’s had enough to eat, which coupled with a lower metabolism means the family has had to change the way they look at food.

Yesterday was PWS Awareness Day and Mrs Kelly hoped people will take a moment to learn about her son’s condition.

When Tobias was born he was different to other babies. He lacked muscle tone and was like a rag doll.

The term the doctors used was “failure to thrive” and five weeks after they took blood samples they told Mrs Kelly her son had a genetic disorder.

“They said he had PWS and that if we had to pick a genetic disorder for him to have this is the one we’d want.”

PWS, a non-inheritable disorder. It’s caused by a problem on the 15^th chromosome and it changes the way the body handles food.

Up until about the age of two, children struggle to gain weight and are delayed in reaching developmental milestones. In Tobias’ case, he had to be fed through a nasal-gastric tube for the first nine months and it wasn’t until he was given growth hormones at 18 months that he started to sit, crawl and walk.

However, once the second stage of the disorder kicked in, it was like a switch had been flipped in Tobias’ body.

“He suddenly started to gain weight,” Mrs Kelly said. “I didn’t do anything different … but he got a real interest in food.

“Within six months he went from really tiny to being a different-looking child.”

Tobias’ brain had stopped regulating his appetite.

According to the NSW PWS Association, people with the disorder have “an unrelenting, overwhelming, overriding physiological drive to eat”, which coupled with an inability to feel full after eating, means weight gain is a real danger. 

People with PWS need to have their access to food strictly controlled, as the ravenous hunger can drive them to great lengths to eat.

Taking a growth hormone helps people with PWS gain some semblance of normalcy, but there’s nothing that can control the hunger.

Mrs Kelly said she wanted to raise awareness so the community would learn to accept children like Tobias.

“He just has that feeling of being hungry all the time and there’s food all around us,” she said.