Muscular dystrophy: Queensland boy Lawson, aged four, has been waiting two years for an operation

Lawson, like many four-year-old boys, is obsessed with diggers. He also loves “construction, cars, and everything,” according to his mum Skye.

It all began with an episode of Peppa Pig in which the cartoon family visited Digger World.

“His OT (occupational therapist) spoke to him about it, because he’s obsessed with diggers and construction and cars and everything,” Lawson’s mum Skye tells 9honey.

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She mentioned there was a similar place the family could visit.

In stepped Make-A-Wish Australia, who made Lawson’s dream come true, sending the family off to Tamborine Mountain, the home of Dig IT.

It was a challenging trip for Lawson, who has muscular dystrophy.

“We had to stop a fair few times because he just gets stiff in the car with his hips and stuff,” Skye explains.

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“You just get him out of the car for a little bit, just so he’s not in the same position for so long.”

Lawson wasn’t diagnosed with the degenerative condition until he was 18 months old, despite both his parents and family members flagging their concerns.

“Pretty much, we noticed as soon as he [was born],” Skye recalls.

“His feet were bent, his toes were pretty much touching his shins, and the nurses said to us, ‘Just put some socks on him, it’ll be fine.'”

Skye and her husband Damien tried to address their concerns with medical staff but were reassured their son was “fine”.

Despite passing all his initial health checks, the worried parents noticed he was delayed in crawling and sitting, and speaking.

They were told, “Some kids are slow”.

It wasn’t until Lawson was 18 months old that their concerns were shared, and he was ultimately diagnosed with a rare form of muscular dystrophy, which causes progressive muscle weakness and loss of muscle mass.

There is no cure, and treatment is focused on improving the quality of life.

Fast-forward to today, and Lawson has been waiting for two years for an operation that would improve his quality of life.

The little boy relies on a feeding tube, and his parents, Skye and Damien, have moved from NSW to Queensland to access further care for their son, leaving behind their support network.

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“The Queensland Children’s Hospital has been amazing with the help and support, and guidance, and the support and help from the team at Caboolture Hospital regarding his NG feeding tube,” Skye says.

The mum describes her son as “very cheeky” and as “a very happy person,” which is extraordinary considering the challenges he has faced so far.

“He’s pretty firm. If he wants something, he wants something,” she says.

A typical day caring for Lawson begins with his morning care.

“He sleeps with us. He’s always slept with us because when he was younger, he couldn’t roll,” Skye explains.

“He’s got his feeding tube connected at night, and then when he gets up, we get him out of bed and do all the things, carry him around the house to do stuff,.

“And then once he’s comfortable, he’ll go on the floor and then he bum shuffles to play.”

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Lawson attends multiple appointments, including OT, speech therapy, and physiotherapy, as well as a neurology team and specialists in respiratory medicine, orthopedics, and cardiology.

They are desperate for help for their son.

“Lawson is very kind and caring, and loving. If something is wrong with someone, he is so caring and gets worried about them,” she says.

“He tells us many, many times a day that he loves us so much, it’s so sweet. We could be talking and then he will just stop and say, ‘Love you so much, Mum, Dad.”

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For now, they are taking things one day at a time.

“We never know what will happen, but we stay strong for Lawson, even on the tough days, we stay strong, we lean on each other,” she says.

“Having a child with such severe medical conditions/disabilities is very hard, but we would do anything for our little man. He opened up a new world for us.”

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