Joshua and Lucas Baric
Tasmania

When both sons were diagnosed with a terminal genetic disorder called Duchenne Muscular Dystrophy (DMD), the Baric Family were shattered.

“It was absolutely devastating,” said mum Jasna. “When we found out, Joshua was four and Lucas was only 18 months old.”

Patients with DMD lack the protein dystrophin, which causes their muscles, including the breathing muscles and those that hold the spine straight, to deteriorate over time. There is no cure for DMD.

“Sometimes dealing with DMD is doom and gloom, but you also meet a lot of nice people that help and support you.”

One of those people is RCH neurologist, Associate Professor Andrew Kornberg, who has cared for Joshua and Lucas for the past six years.

“Andrew has been with us since the diagnosis and he treats our kids like they’re his own sons. Andrew is our advocate and our backbone. He’s fabulous.”

As children affected by DMD generally lose the ability to walk by 12 years of age, Andrew has prescribed steroidal medication so Joshua and Lucas maintain muscle mass and function for as long as possible.

“The steroids help the boys stay more mobile and have more energy. Without the steroids, the boys wouldn’t be walking right now. Though Joshua is starting to decline, he’s still doing really well and has been walking for years longer than expected.”

Describing living with DMD as a “rollercoaster”, Jasna concentrates on looking after her boys and focussing on what matters most.

“We have to think about the now and not the future. We don’t take life for granted, so we make great memories and live life to the fullest.”

As children like Joshua and Lucas need world leading care, Jasna is grateful to those supporting Andrew’s Fly for the Kids fundraising.

“Seeing the support for Fly for the Kids is just a great feeling, it’s so positive. It’s wonderful that people out there are donating to something so important. It’s just beautiful and puts a big smile on my face.”