For brave Wodonga 11-year-old Kaleb Mcburnie, living with Duchenne muscular dystrophy means losing little pieces every day.
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Losing muscle cells, strength, the ability to walk and, ultimately, to breathe.
But his mum Leza said Kaleb’s DMD also means trying to make the most of every day.
She said she loves her son because of his smile.
“Him being him,” she said.
“Kaleb takes every day as it comes – it’s the only way you can do it.”
Yet time is not on their side, so Leza is trying to raise money for an electric wheelchair accessible van, in order for Kaleb to move around and get the most out of life.
They need it for help getting to specialist appointments, school and shopping.
He’s also required to travel to Melbourne every three months for ongoing treatment.
Leza said her son, who’s almost 12, doesn't walk that much already and uses his wheelchair most of the time.
“Kaleb can't get up from the ground, so mum helps him when he falls down,” she said.
“He has carers that come in four days a week, so far, to help him shower and get dressed.”
But Kaleb will soon need a motorised wheelchair because he has come to his teen years, when the most significant loss of skeletal muscle strength takes place.
Kaleb takes every day as it comes – it’s the only way you can do it.
- Leza Mcburnie on love for her son, Kaleb.
It's at this point where doing anything with the legs, arms or torso will require assistance.
Most young men will retain the use of their fingers through this phase, so they can generally still write and use a computer.
There is no known cure for DMD, a disease in which one in every 3000 boys are diagnosed with each year.
A new drug for the treatment of DMD called Eteplirsen, originally developed at the University of Western Australia, was approved by the US Food and Drug Administration this week.
But it was unclear when the drug would be available in Australia.
Those with DMD are more often surviving into their early 30s.
For now, any donation to Leza and Kaleb would go a long way in their mission to get a van.
“I’m aiming for my son to have freedom to do what he wants,” Leza said.
“He’s nice and quiet, but cheeky in a way. He likes to have a joke.”
Kaleb loves playing, Xbox, watching the Hawks in the footy and playing with his Ford racing car.
To donate for the wheelchair accessible van, go to gofundme.com/e65wf2de4.
And to send a message of support to Kaleb, visit the Helping Kaleb Mcburnie Facebook page.