I want to be big & strong like Daddy!
Little Kalarny is full of smiles and determination
Born on January 31, 2017, Kalarny Parker was a quiet baby who slept and fed well. “We thought we'd struck gold, he was so good,” his mum Lykera tells Woman’s Day.
However, when they took him to the doctor for his six-week check-up, it was discovered Kalarny had a heart murmur, and his heart was twice the size it should be. “We were beside ourselves,” says the 31-year-old part-time chef. “We were flown to Dubbo Hospital, which was the nearest major hospital, and told Kalarny was in the first stages of heart failure.”
After three-and-a-half hours of life-saving emergency surgery to fix his heart, little Kalarny had more battles ahead. As doting parents Lykera and Aaron from Mudgee, NSW kept a crib-side vigil, they noticed their bub wasn't bouncing back.
Further tests revealed devastating news – Kalarny had spinal muscular atrophy (SMA).
“Doctors said Kalarny would not survive past the first year of his life,” Lykera recalls.
Referred to Sydney Children's Hospital, Randwick, a paediatric neurologist informed the couple of an overseas drug being trialled in Australia involving an injection into the spine every four months to slow the disease's progression and keep Kalarny alive.
Kalarny was accepted, and now aged five, Lykera and her 38-year-old miner hubby are constantly astounded by their son's fighting spirit as he continues to defy the odds. “He says, ‘I've had my muscle juice, now I'm gonna get big and strong, like Daddy,'” Lykera says of her son who idolises his father.
While Kalarny has breathing support and feeds through a tube, he gets around in his wheelchair, can sit and crawl unaided and his prognosis is good.
The couple attribute their son's survival to the magic of medical science.
“It's important to show people the wonders of what medical science can achieve. Look at Kalarny,” says Lykera who supports the Children's Medical Research Institute and the Jeans for Genes organisation of which Kalarny is a face of this year.
But it was starting pre-school that gave Kalarny's parents one of their proudest moments.
“He rolled himself in on his wheelchair, full of confidence,” says Lykera. “Kalarny's got a beautiful personality and is the happiest kid in the world.
“He takes life by the reins. There's no holding him back.” Jeans for Genes Day is on August 5. For more details visit jeansforgenes.org.au