RAISING AWARENESS: Steve and Kathryn Vandenbergh with their son Scott who wants to remind people of the difficulties faced by people living with a rare disease. Photo: STEVE GOSCH 0227sgscott
AS one of only 40 people in Australia with ataxia telangiectasia Scott Vandenbergh has spent the past 23 years facing the challenges that come with having a rare disease.
Scott’s one of an estimated one in 10 Australians living with or affected by a rare disease, many of whom, like Scott, remain undiagnosed for many years.
Despite Scott’s physical limitations, he’s now confined to a wheel chair, he’s already accomplished many things in his life including skydiving, playing competitive boccia, working part time and undertaking a number of courses in IT and photography.
He’s even taken up breeding alpacas.
Scott’s parents Steve and Kathryn Vandenbergh have built a flat for their son at their Springside property so he can have some independence with family support close by.
Mr Vandenbergh said the lack of support facilities for Scott when he was young was one of the most difficult aspects of his son’s condition which is genetic and degenerative.
“We had nowhere to go to get help,” Mr Vandenbergh said.
In the end the family were able to access some assistance from organisations such as the Spastic Centre as it was called then.
Mr Vandenbergh said the fact the family were living in Dubbo at the time meant they also didn’t have family support.
“It was hard, we were on our own and sometimes we did it tough,” he said.
“Something like this could have brought us together or pulled us apart, we were lucky.”
Mr Vandenbergh said he had nothing but admiration for his son who “makes the best of what he’s got”.
“He’s amazing, he’s done more in his life than I’ll ever do,” he said.
The Brisbane Children’s Hospital has established facilities to help people like Scott, and once a year the Vandenberghs travel there to meet with specialists.
Mr Vandenbergh said he decided to speak to the Central Western Daily to help raise people’s awareness of today’s World Rare Disease Day.
“I’d like people to understand there are other people out there doing it a lot tougher than they are.”
tracey.prisk@
fairfaxmedia.com.au
