Smiley six-year-old Evan Priestley has so much effervescent energy his little body just can't keep up.
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Typical of active little boys he loves nothing more than to ride his bike - but what is not typical is the pain associated with this simple childhood pleasure.
Until recently that is, when he was gifted a custom-made Freedom Wheels bike and subsequently gained the freedom to ride like the wind - for a little while anyway.
Now he is aiming to cycle a whopping 10 kilometres to raise money to help buy a bike for another child with a disability.
As a newborn Evan's parents Steve and Emily realised 'something was not quite right' with their third child and at the age of three he was diagnosed with the connective tissue disorder Ehlers-Danlos Syndrome.
That means he can't always keep up with his beloved big brothers Liam, 13, and Cohen, 11.
Evan struggles with fine motor skills so tasks such as doing up buttons are a real challenge. He gets fatigued easily and often needs help to dress.
But the biggest issue for Evan is pain.
And on a regular basis this means Steve and Emily witnessing what all parents dread - the anguish of seeing their child in pain.
His little joints dislocate easily - he has had three knee dislocations just in this year.
"When that happens he's not happy as he can't get up and run like he wants to," said Mrs Priestley.
But the little cutie's funny personality comes alive when he has the freedom to ride his own bike.
Evan was gifted his custom Freedom Wheels bike from the Australian Lions Children Mobility Foundation.
It was the first time he had been able to ride with a friend. It was pretty special.
- Evan's Mum, Emily Priestley.
Mrs Priestley said Evan previously had a little regular bike with training wheels but he didn't have the strength to ride it. They tried a balance bike which he could ride well and which he loved.
"But he would be in so much pain after just a little ride that it would leave him incapacitated for days," she said.
"With this bike he can ride it with less effort, with less pain and can actually go for a big ride and not need painkillers for several days afterwards.
"It's pretty huge.
"He still gets tired easily but is able to go with a proper ride with his brothers and we actually took it on holidays with us and he was able to ride it with one of his little friends and it was just amazing.
"It was the first time he had been able to ride with a friend. It was pretty special."
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What is really special is Evan wants other kids to have the same freedom. And he is putting his pedal to the metal and is halfway through his 10 kilometres fundraiser.
Evan is part of the Action Occupational Therapy team taking part in the Ready, Set, Move! fundraiser this month.
Ready, Set, Move! sees participants choose to walk, run, wheel or cycle in November to raise money to buy people with a disability a custom made Freedom Wheels bicycle.
The not for profit group Freedom Wheels - TAD designs and builds bikes specifically suited to a person's cognitive and physical needs.
The Priestleys first heard about Freedom Wheels -TAD from Evan's Physiotherapist. The company, which is based in Sydney, had been travelling to regional areas to assess children.
About a year ago Action Occupational Therapy in Maitland (where Emily now works) in NSW's Hunter Valley came on board and their occupational therapists now carry out assessments in this area.
Evan is a student at Ashtonfield Public School, attending five days a week most of the time.
He proudly wore his Freedom Wheels hat to school for show and tell, earned after he raised his first $50.
"That day he came home from school with another $150 in donations," said Mrs Priestley.
So far Evan has cycled six kilometers of his goal of 10 kilometres and raised close to $1700 of his goal of $2500.
Because Evan's bike is not easily transported the rides are taking place around the family's East Maitland home.
"He's going really well going on the footpaths near our house."
The engineered bike ensures a smooth ride for Evan and most importantly it is easy to pedal and has supportive adaptations for him.
The high riser on the back means Emily can push Evan if he gets tired and the brakes are easy to use for a child with low muscle tone and hyper mobility.
The goal is to raise as much money as possible to buy a Freedom Wheels for another child. They cost around $2000.
You can donate to Evan's fundraiser - and learn more about Freedom Wheels - through Evan's Ready Set Move Facebook link.
