We’re all looking for a little sunshine in our lives. But for Derrimut nine-year-old Konna, life isn’t quite that simple.
He was born with limited vision and a body that doesn’t produce melanin, which helps protect the skin from the ravages of the sun. The diagnosis of oculocutaneous albinism was made when he was just four months old. It means he must be fully clothed and wear tinted glasses whenever he’s outdoors.
Konna’s mother, Cindy Turkovic, says the rare disorder is one of the reasons he recently had to leave behind the school he loved. “He loved that school but it got too big,” she says. “With 600 kids all dressed in blue, he got a bit lost and couldn’t find his mates. But he’s fitted in beautifully [at Ardeer Primary School].’’
Konna’s condition hasn’t stopped him from trying out a variety of pursuits such as cricket, choirs and drama groups. “He’s very social; he doesn’t let it hinder him at all,” Turkovic says. “[But] what people with good sight can see at 18 metres away, Konna needs to be three metres away [to see]. Even then it’s still blurry; his sight will never be clear. He’s got plenty of dreams; it’s just not all of them can come true.”
Turkovic, who also has a 19-year-old son with a disability, admits life can be tough. But she has plenty of motivation to get out of bed each day. “The love I get keeps me going,” she says. “And advances in technology – the hope that one day there will be a cure.”
Turkovic is full of praise for Vision Australia, which has helped her understand Konna’s condition and guide his transition into education.
In the lead-up to Christmas, people are being encouraged to donate to Vision Australia by lighting a virtual candle and helping the organisation support families of children who are blind or have limited vision.
