Huxley’s Heroes is not a movie, it is a movement intent on raising awareness of a very rare condition known as Angelman Syndrome (AS). 

It is so rare in fact only 509 people have been diagnosed in Australia, with ages spanning from as young as four months upwards.

Angelman Syndrome (AS) is a genetic condition that affects the nervous system, leading to challenges with movement, balance and communication. 

It is caused by changes to chromosome 15, which impacts brain function.

When parents Jessie and Bree Maguire from Broken Hill NSW, received the diagnosis of their then-four-month-old baby Huxley, it was a combination of relief and grief. 

Relief there was a name for what was happening with their little baby and utter grief for the life they had envisioned for their baby and them as a family.

The impact of the condition creates significant challenges for his family.

At 12 months old Huxley sleeps from 10am to 12 noon, then again 4am through to around 5am - literally less than five hours out of twenty-four - this is the norm for them. 

Huxley in hospital. IMAGE SUPPLIED.

Huxley is too young to be given melatonin which will help his body learn to sleep, just one of many missing links his parents hope, with intense intervention he can learn to make. Intense intervention, which is close to impossible to find, especially in Broken Hill.

Whilst not a comprehensive list of all symptoms of Angelman Syndrome, the main ones are: developmental delay, intellectual disability, speech and walking difficulties, ataxia, seizures.

Some babies have difficulty feeding, sleep disturbance, spine curvature, GERD (gastroesophageal reflux disease),  eye issues such as involuntary eye movement, crossed eyes, light sensitivity and skin discoloration.

To say that specialist support is thin on the ground is a serious understatement.

There are currently only three nurses throughout Australia who are educated and trained in Angelman Syndrome.

Ideally, Huxley's parents would love for there to be a specialist nurse in at least every state in Australia.

Hero Mitch slogs it out along the Barrier Highway. IMAGE: facebook

However, the need for educated professionals does not stop with FAST (Foundation for Angelman Syndrome Therapeutics) nurses.

"There’s a need for physiotherapists, speech therapists, GP’s, pediatrics, dental – every aspect of life most of us take for granted need to be educated with this rare syndrome," said Jessie.

"Early intervention is crucial, it is only because my background is family day care that I know how other babies develop.

"I suspect there are others with Angelman Syndrome who may have been mis-diagnosed, as some of the presenting symptoms may look like cerebral palsy, autism, or developmental delay amongst others. 

"A simple DNA blood test is the only way, at this time, to get a diagnosis".

Huxley’s parents say what keeps them going in an otherwise very stressful and difficult situation are developments in research.

A cure, whilst still several years away is on the horizon.

When asked about Mitch McKenney and his motivation, Jessie said "Mitch is the father of one of the children I care for in my family day care business, and he decided he needed to do something to raise awareness, so whilst he’s not a runner, he decided he’d run from Broken Hill to Newcastle via many rural towns".

As well as seeking donations, which are tax deductible, the aim is to raise awareness to families in rural towns particularly, as too often, families are not able to access the same medical services as those in large cities. 

Jessie and Mitch are urging rural families who feel something isn’t quite right with their child to keep pushing for answers, be the advocate for their child, and to consider requesting a DNA blood test, even if it’s not available on medicare. 

A main characteristic of Angelman Syndrome is the person always appears happy and laughing, even if they are in considerable pain. The person is unable to demonstrate pain like others and sometimes, this can lead to mis-diagnosis too.

Jessie said, "Mitch and the team have several rural towns yet to visit, and what spurs him on the most, is the friendly welcomes, the tooting of horns and the incredible support he has received along the way, so if you see Mitch, give him a wave, a toot or a hearty hand-shake".

You can follow Mitch’s journey online by visiting Huxley’s Heroes where you will be able to see where he’s been and where he’s headed.

BELOW: Mitch has already passed through Nyngan, where the team caught up with the Big Bogan and his mate. IMAGE: facebook.