The conversation Leza McBurnie had with a young Wangaratta family yesterday is what she longed for many years ago, coming to terms with the diagnosis of her son’s Duchenne muscular dystrophy.
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But the Wodonga mum no longer feels so isolated as she and her friends and family build awareness of the condition, the deadliest form of muscular dystrophy.
“We recently met another boy who has DMD and we met a six-year-old from Wangaratta on Sunday who has it,” she said.
“I told the family if they had any questions I could help – I had no-one to talk to, so if I can make things easier for others, that’s what I’m here for.
“It’s different for every kid – one could not be able to walk and another at the same age might still be walking.
“One in every 3000 boys is diagnosed with it.”
When The Border Mail first met Kaleb McBurnie in April 2016, he still had the ability to walk.
Since then the condition – which mostly affects boys and has no cure – has further impacted his mobility.
The community has rallied behind Ms McBurnie, helping her to purchase a wheelchair-accessible van.
“About $8000 was raised and we finally got the van this year; it fits the wheelchair in, and I can get him to appointments in Melbourne and to school,” she said.
“Kaleb is in a electric wheelchair and it just doesn’t fit in the bus, with the amount of kids at Belvoir (Special School).
“The van makes things much easier for us.”
This time, proceeds from the weekend’s fundraiser – which featured a display of 23 Porsches, silent auctions and a BBQ in Albury – will instead go to Muscular Dystrophy Australia.
Kansas Michael, who works with Ms McBurnie’s father, was behind the day.
“Her dad was telling another guy at work about Kaleb, and I thought, I have a nice car – I could take the young fella for a drive and make his day,” he said.
“Then I thought, I could do one better than that – let’s get all the Albury Porsche owners together to attract some people and we could do an awareness day.
“We’ve been really well-supported.”
Terry Rafferty travelled from Melbourne in a Porsche 911 to participate, knowing well about muscular dystrophy, but not of the form Kaleb lives with.
“Kansas was selling some Porsche doors and I answered an ad – he called me to tell me it was on,” he said.
“It is sad that muscular dystrophy isn’t really high on the agenda for funding.
“I think a lot of kids do go under the radar, so I thought it was a good cause to help him out and other kids like him.”
