Three years later, Lockie was diagnosed with Duchenne muscular dystrophy [DMD], a rare form of muscular dystrophy that is fast-acting and is found almost exclusively in young boys.

The disease has no effective treatment and there is no known cure. On average, sufferers are in a wheelchair by 12 and life expectancy is typically only as high as 25 years old.

None of this has stopped Lockie's mother, Peta, from doing everything she can to make a difference in not only her son's life but the lives of children and parents affected by the disease.

A 'Walk for Duchenne' has been organised by Peta in Mudgee on Saturday, March 9 and she is hoping it will raise money and awareness for the lesser-known disease.

"So every year the leading body for this disease in Australia, Save Our Sons, does a walk,"

"They walk 172 km across Sydney, it was started by a father, the foundation whose son has the disease as well,"

"Basically this year is the first year they’ve decided to do what’s called 'community walk', so other families that can’t get to Sydney can get their communities together and join the walk on the last day,"

"So on March 9 which is the last day of the five-day, 172km walk. Family and friends of mine and Lockie’s are going to walk Mudgee,"

"We’re going to walk 7.9km which represents the 79 exons in the Dystrophin gene. Where one fault or one duplication can cause the disease and it makes the Dystrophin completely ineffective."

Sufferers of DMD often lose the ability in their legs first. This can cause extreme fatigue and usually requires the need of a wheelchair prior to needing a wheelchair full-time.

Peta says it can be hard to tell a four-year-old boy to take it easy.

"Lockie can walk around now, but we have to manage his fatigue and when going long distances, I put him into a pram and I have to remind him to slow down," Peta said.

Peta said one of the hardest challenges she faces is not knowing what the future holds for Lockie.

"I think the hardest aspect is the fact that when you have a child, you hope that they could live a life that would be just amazing, that’s what you hope for," Peta said.

"To be turned around and told that it’s just not going to happen - it’s just - it’s earth-shattering. We’re doing really well now but if you’d have spoken to us six months ago, it was really hard to get past,"

"We’re losing a generation, our males that are the way we reproduce, they’re dying because of this gene. That’s a pretty scary thought when you sit down and think about it,"

"They don’t end up having children so with Lockie, his future finishes with him."

Peta didn't know she was a carrier of the gene until Lockie was diagnosed, but now she worries her daughter might be affected too.

"Now my daughter is at risk of her generation stopping after her because she could have ended up with this gene and carry it on I guess at least she has a choice - which is a horrible thought - but now that we know she’s got some degree of choice in the matter. We didn't."

Thanks to social media, Peta and others are able to connect with and support parents of children with the disease and grow important personal connections.

"There was a little boy just before Christmas," Peta sighed.

"He was Lockie’s age and he actually died from the disease, they can live until they’re 25 but something could happen between now and then and they might not survive until then."

"We’ve lost 15 boys in the Duchenne community since January and we’re all pretty close-knit thanks to social media it connects us all and they understand what you’re going through,"

"So when one member of the community does it ripples through the whole community and the one at Christmas really got to me because they were diagnosed at a very similar time [as Lockie] and the mum and I had become quite close,"

"How did that happen?, They’re told they can live until they’re 25 and he’s just woken up one day and just died,"

"How can you wrap your head around that aspect? I try not to think about it, but at the same time you have to recognise those deaths because they’re gonna keep happening unless we become more proactive in fighting it."

"Mudgee is an integral part of who we are as a family and so far the people that know about it have been really good but a lot of people - they hear about it but they don’t understand it because they haven’t heard about it before,"

Through tears, Peta explains how hard it has been on the family since the diagnosis.

"Josh struggles, it’s really hard for him. I’m the open one, I’m the one that will fight it, I’m the one that does the hospital trips, I guess I’m the one that’s had to step up," Peta said.

"It’s hard for a dad, they want to take them fishing, they wanna take them camping. Do all the things that dads do with their boys and it’s really hard for Josh,"

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"He’s a very closed book when it comes to this disease because he doesn’t know how to deal with it,"

"Eventually, hopefully over time it’ll get easier - maybe that’s wishful thinking - but in the meantime I’m the one that’s holding it all together. Which is fine, that’s what you do for a family."

Lockie's father, Mudgee's Joshua Cox had unexpected support in the CFMEU who donated $4000 to the Save Our Sons Foundation.

"It was a big thing, Josh didn’t talk Lockie with the boys at work, it was really hard for him to even have a conversation about it. So for them to decide behind his back to support him, made him cry." Peta said.

"It’s just really heartwarming. It was 12 months ago that the union [CFMEU] did that - I've raised about $360 on social media but apart from that it's the walkers who have paid for their registration in the community who have contributed."

When Peta decided to do the walk she was going to do it solo. "I thought 'I'll walk the 7.9km and that’s my part’. Maybe someone would see my shirt and go, ‘oh, what are you walking for?’ and then I could educate,"

"Even if it's one person, that one person might go on and tell another person and then slowly you’re getting the word out,"

"It started off with me just doing a walk then Josh’s sister was like ‘Well I’ll be over that weekend, I wanna walk.’ and I sent the event and other people were like ‘yep I’m gonna walk too',"

"It’s gone from just a small group of us to being a group that are walking together for something they didn’t know about until Lockie was diagnosed."

The walk starts at 8.30am on Saturday morning at Lawson park, and loops around through Putta Bucca, Glen Willow and Market Street before finishing back at Lawson Park.

Peta says the walk will take about two hours and she's even prepared a support vehicle, driven by her mother-in-law, to tag along with bottles of water.

As we concluded the interview, Peta recalls something Save Our Sons founder Elie Eid says.

"Even If we as able-bodied people struggle, it’s a fraction of these how these boys struggle every single day of their life."

"It helps put things into perspective. I’ll never fully comprehend because I’m not the one living with the disease," she said.