Then, two weeks following the surgery, specialists diagnosed Kalarny with SMA.
SMA is an inherited, genetic condition which affects the nerves in the spinal cords which control all of the muscle movements of the body, including the muscles of head control, arm and leg movement.
When SMA isn’t detected shortly after birth the condition can cause irreversible damage to motor neurons, and even death.
“(The doctor) said, ‘He’s got spinal muscular atrophy’. We’d never heard of it before,” Ms Parker recalled.
“He said, ‘It means that your child will not live.’ Of course we were devastated and he pretty much told us to go home and plan a funeral, as there was nothing they could do.”
Fortunately the Parkers were able to access medical treatment that had not yet been approved in Australia on compassionate grounds which has saved Kalarny’s life.
As part of his treatment for SMA, Kalarny has undergone multiple surgeries, gets lumbar punctures every four months as well as a different kind of therapy every day.
'A normal child that's trapped inside a baby's body'
Kalarny relies on a wheelchair or walking frame to move around, however he tires quickly when using the frame to move.
Today Kalarny is a happy and bubbly four-year-old. Photo / Supplied
“You’ve pretty much got a normal child trapped inside a baby’s body,” Ms Parker said.
While Ms Parker feels incredibly lucky that her son is still alive, it’s also difficult to come to terms with the fact that had a test for SMA been done shortly after Kalarny was born in 2017, things would be different.
In Australia, parents of every newborn are offered a routine heel-prick blood test to check babies for genetic illnesses such as cystic fibrosis.
“We’re happy for the parents that have access to it, it brings you to tears seeing how well they are doing and how much of normal life they (have),” she said.
“But as a parent your heart breaks when you see another child taking a step because they had intervention before they got too weak.”
As part of SMA Awareness Month, SMA Australia is calling for the newborn heel-prick test to include SMA detection for all Australian newborns.
“$10 is nothing in the scheme of a child’s life,” Ms Parker said.
“Every child deserves to lead a happy and fulfilling life without having to be trapped essentially in a baby’s body, not being able to breathe, not being able to eat. It just takes everything away from them.”
Screening for SMA has been included in the test since 2018 as part of a trial in New South Wales and the ACT.
The SMA test costs around $10.
In Australia, newborn tests currently only screen for 25 conditions compared to the US state of California, which tests for 80.