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 – then everything changed when she discovered what she calls “the magic of research’’.
Four 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. Medical research is moving faster than ever, but investment is much slower. The 1 in 20 children facing a birth defect or genetic disease live in hope that one day the incurable can become curable.
A quiet baby who slept and fed well, Lykera and her husband Aaron thought they had “struck gold’’ with Kalarny. However, when they took him to the doctor for a regular check-up, it was discovered he had a heart murmur and further investigation revealed his heart was twice the size it should be. Living in a remote part of NSW, they were bundled into a plane to fly to the nearest major hospital for heart surgery.
“After heart surgery, he didn't bounce back, he still had work 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. It is a fatal condition where every muscle in the body slowly dies.
“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 didn't want him to see me as that sad mother that looked at him and cried every time like I had to give him the life that he deserved if we were going to lose him.’’
They then 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.
“It's dreadful,’’ Lykera said. “But he says, ‘I need to go for my muscle juice’. And he says,’ I've had my muscle juice now, I'm gonna get big and strong, like Daddy. It’s quite beautiful.
“He's the happiest kid in the world. He's just got a beautiful personality. And he just takes life by the reins and goes with it. He loves his motorized 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 are 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. Kalarny was born too early for the trials, but the family hope one day this could save the life of every child with SMA.
“These children are living a normal life, no wheelchairs, no ventilation support, no feeding support, they're living normal lives,’’ Lykera said. “There’s just there's so much hope, it blows my mind. 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.’’
She encouraged people to support Jeans for Genes to save lives like Kalarny’s.
"You’re saving a child's life; you're giving someone that glimmer of hope that they will get to watch their child grow up. Without donations these kids may not have the chance to live a happy life."
“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 5th August this year. Sign up now to start fundraising or donate any time at JeansforGenes.org.au