MUM USING FILM TO FIGHT FEAR

HE’S a fearless daredevil who loves climbing, being outdoors and trying “extreme” activities.

But when Alfie Fisk was diagnosed with a rare eye condition at just four months of age, his parents, Rob and Diana, feared their youngest child would have limited opportunities.

Alfie, now three, has nystagmus — a rare eye condition where the eyes make repetitive uncontrolled movements. It can lead to reduced vision and depth perception and affect balance and co-ordination.

Alfie was diagnosed with congenital nystagmus after his four-month maternal health check-up. “You don’t expect anything but a perfectly healthy child,” Ms Fisk said.

On hearing the diagnosis Ms Fisk began searching online and unearthed a wealth of information that led her to believe her son faced an unenviable future.

“I thought he would be bullied, be harassed. That he’d never be able to play sport and have massive problems,” Ms Fisk said. “It was really scary.”

Alfie has proved his mum wrong by going to kindergarten and daycare and living the life of an average three-year-old. While challenges lie ahead, his achievements have defied anything the Fisks initially thought was possible.

Now Ms Fisk wants to share this with other families dealing with devastating diagnoses. The film producer is making a one-hour film that will highlight the challenges Alfie faces and, most importantly, document the normality of his life.

It will star Geelong Paralympian Jess Gallagher, who has defied the degenerative macular disease she was diagnosed with in Year 12 that left her legally blind.

“Jess was somebody who should have given up and didn’t and has achieved incredible things,” Ms Fisk said. “I thought she could show Alfie that anyone can live whatever life they want.”

With the support of Ms Gallagher and Vision Australia, Ms Fisk hopes her film will prove that people with a disability can achieve great things, but also provide hope to many families.

“When we were researching nystagmus there just wasn’t anything positive,” she said. “The websites were full of fear, every clip showed the worst case.

“If we had found nystagmus footage of someone living their everyday life it would have reduced the fear.”

Ms Fisk hopes the community can support the project so it can be distributed widely to families in need.

To support her project, visit australianculturalfund.org.au/ projects/true-vision/