By Monique Cowper
Kalarny is thriving thanks to cutting edge research.
When new mum Lykera was told her son would not live to see his first birthday, she struggled to comprehend the news and did not want to get attached to him.
But all that changed when she discovered what she calls “the magic of research’’.
Five years later, and Kalarny is one of the faces of the 2022 Jeans for Genes campaign, which raises funds for the vital work being done in the labs at Children’s Medical Research Institute.
A quiet baby who slept and fed well, Lykera and Aaron thought they had “struck gold’’ with Kalarny. However, at a regular GP check- up, it was discovered he had a heart murmur and further investigation revealed his heart was twice the size it should be. They were bundled into a plane to fly to the nearest major hospital for heart surgery.
“After heart surgery, he didn’t bounce back,’’ Lykera says. “He still had trouble breathing, and he was still quite floppy, he couldn’t hold his head up, he couldn’t lift his arm off the ground.’’
Further tests eventually revealed that Kalarny had spinal muscular atrophy – a fatal condition where every muscle in the body slowly dies.
“It was devastating,’’ Lykera says. “The doctor said it’s a degenerative disease and he will not survive past the first year of his life.
“I couldn’t even look at Kalarny for a long time. I didn’t want to get attached to him. I thought, ‘he’s going to die, what’s the point of this?’ But you had to switch that frame of mind. I had to give him the life that he deserved, if we were going to lose him.’’ Thankfully, they met a specialist who told them of an overseas drug trial, and Kalarny was accepted within 24 hours. He now has injections into his spine every three months, which is keeping him alive. “He’s the happiest kid in the world. He’s just got a beautiful personality,” Lykera says. “He has life by the reins and goes with it. He has a motorised car that he drives around, he’s nearly rolled that thing. But that’s just being a country kid. There’s no holding him back.” Lykera is on the Mudgee Fundraising Committee for CMRI because she knows that the Gene Therapy Research Unit is part of a team running successful gene therapy trials for kids with SMA. Completely different to the medicine that Kalarny receives, these patients have one simple injection to cure them for life.
“These children are living a life with no wheelchairs, no ventilation support, no feeding support,’’ Lykera says. “It’s life changing. It blows my mind that if we were to have another child that had SMA, having gene therapy at birth could mean that this child would not show any signs of SMA.’’
“I think it’s important for us to show people the magic of what medical science can achieve. Look at Kalarny. Magic happens.’’
Jeans for Genes Day is on Friday, August 5. Sign up to start fundraising or donate at JeansforGenes.org.au