HARLEN Petersen is a typical three-year-old boy who loves the Wiggles and is happy, funny and mischievous.
But the Wellington Point boy has many more challenges to face than other children his age.
Harlen has septo-optic dysplasia, a rare congenital malformation of the eye which means he has only limited vision and some developmental delays.
Harlen’s mum Emma Evert said neither she nor Harlen’s doctors knew for sure how much he could see.
“We don’t know the exact percentage of vision he has,” Ms Evert said.
“At birth, they said he would have no vision.
“At one, he still showed nothing.
“At two, his left eye was showing something but they didn’t know what.”
Ms Evert said that they would know more when Harlen could talk about what he could see.
“We do know he is learning colours and shapes,” she said.
“We think he’s very short-sighted. When we sit across from him he knows we’re there but doesn’t know who it is until we speak.”
Harlen was the first person in Townsville to get a National Disability Insurance Scheme plan when the scheme rolled out there two years ago.
The family has since relocated to the Redlands.
Harlen receives funding for speech therapy, occupational therapy, physiotherapy and an orientation and mobility allowance where a support worker teaches him how to navigate safely in the space around him.
He also received orthotics and a walking frame to help him learn to walk.
Ms Evert said being able to access early intervention therapies when Harlen was so young – only 12 months at the time – had been key to his development over the past few years.
“It was so important in his progress,” she said.
“When the NDIS came, it was a godsend because we just had money there to access the therapies that he needed.
“Harlen has come along in leaps and bounds.
He was doing nothing but rolling over before but within a few months of being on the scheme, he was sitting up and bum-scooting.
“When we moved to Brisbane, we also learned sign language so he could communicate with us which removed the frustration of him not being able to tell us what he wanted.”
Ms Evert said Harlen had started to talk in full sentences.
“I don’t know if that would’ve ever happened if we weren’t on the NDIS,” she said.
“I don’t know if the improvements he’s made so far and will continue to happen would have happened.”
Ms Evert said Harlen had learned to walk at Christmas last year after receiving intensive physiotherapy, but experienced a decline in strength over the past few months and went back to bum-shuffling.
She is determined to get her little boy up walking again soon.
“We don’t know what happened but we are going through testing now to see what’s happened,” Ms Evert said.
“We’re back at square one, so now we’re going to start the intensive physio again and get him back up on his feet again.”
“His therapists don’t think it’s a big concern though, as they say the cognitive progress is more important at this point.”
