News

Jaxon’s fight to live with a disease no-one understands

JAXON McGourty suffers from Juvenile Dermatomyositis.
JAXON McGourty suffers from Juvenile Dermatomyositis. Renee Albrecht

But, as he can tell you, that is not always a good thing.

The Kandanga state school pupil went suddenly from athlete to invalid over Christmas and Boxing Day, 2014.

"He was uncontrollably active," his mother Emily Cavanagh told The Gympie Times," almost ADHD.

"He was just go, go, go in swimming and 16th in Queensland for eight-year-old boys in BMX."

Then, after a bad case of sunburn, he came out in a rash and suddenly did not move much at all.

"Within seven weeks he was in a wheelchair," Ms Cavanagh said.

 

But the innate strength that propelled him as an athlete is now the source of the courage which is helping him face the fight of his life, to beat a disease no one seems to understand.

"I'm not allowed in the sun for long and I can't do much and I'm not strong,'' Jaxon said. "It attacks my liver, kidneys and my muscles.

"My life was really hard last year, seeing all the other kids doing things that I can't do.

"It makes me really unhappy. I'm hoping they find a cure."

Jaxon's illness is called Juvenile Dermatomyositis - and in practical terms that seems to be almost all anyone knows about it.

"Breaking it down, 'derma' means skin, because it manifests itself as a head-to-toe rash and 'myositis' means it attacks the muscles," Ms Cavanagh said.

"Doctors came up with about four different diagnoses, all incorrect, before finding it was a disease affecting only about three kids a year. It affects the trunk muscles - abdominal wall, chest, neck, larynx and shoulders."

Auto-immune diseases are a frightening new plague and most people know a victim.

They include Type 1 diabetes, lupis, fibro myalgia and chronic fatigue.

"Jaxon's own body is trying to kill him and it's having a real good shot," Ms Cavanagh said.

"There is no cure and no known cause."

Ms Cavanagh is studying to be a nurse so she can understand the terminology of the disease, while her partner Morgan McGourty keeps the income flowing.

And there is Jaxon's brother Ollie, 5, to think of.

So how does Jaxon cope?

"The school is just awesome," Emily said. "The education department put in wheelchair access and a new wheelchair access toilet, a covered walkway to the play area and they're helping him catch up on school work with a special tutor."

Gympie Times

Topics:  disease, editors picks, health



Book now as long weekend visitor invasion makes for tourism hot spots across Gympie region.

ON THE ROAD: Motoring families descend on Gympie Region for the long weekend.

GYMPIE region is a holiday hot spot this school holiday season

The stay-at-home mum's domestic workout

Stay at Home mum

JODY Allen says you don't need a gym to keep fit and healthy

Only a few days to go before Heart of Gold Fest kicks off

SPECIAL PREVIEW: Heart of Gold Artistic Director Emily Avila at the Heritage Theatre in the Gympie Civic Centre.

PREPARATIONS are well under way for the Heart of Gold Film Festival.

Local Partners

Marvel's Luke Cage S1E4: Step In The Arena review

Mike Colter in a scene from the TV series Marvel's Luke Cage. Supplied by Netflix.

*WARNING: spoilers if you haven't seen Marvel's Luke Cage*

Rob Kardashian admits his first crush was his sister Kim

Rob Kardashian once had a crush on his sister Kim Kardashian West.

Marvel's Luke Cage S1E3: Who's Gonna Take The Weight

Mahershala Ali in a scene from the TV series Marvel's Luke Cage. Supplied by Netflix.

*WARNING: spoilers if you haven't seen Marvel's Luke Cage*

Marvel's Luke Cage S1E2: Code of the Streets review

Simone Missick and Mike Colter in a scene from the TV series Marvel's Luke Cage. Supplied by Netflix.

*WARNING: spoilers if you haven't seen Marvel's Luke Cage*

Kim Kardashian West 'sick of talking about Taylor Swift'

Kim Kardashian West is sick of talking about Taylor Swift.

Justin Bieber ordered to attend Miami deposition

Justin Bieber has been ordered to travel to Miami for a deposition

Builder and roofer are cleared in faded roof case

CLEARED: a Gympie builder has been cleared of blame for sunscreen damage to a roof.

Gympie builder cleared over sunscreen damage claim

Beach-side real estate starts at $85k on Fraser Coast

HERVEY BAY REAL ESTATE: You can buy this townhouse in Scarness for under $300k.

Live your beach-living dream locally.

Gympie Century 21 owner forges his own path

ON THE ROAD TO SUCCESS: Billy Mitchell (right) with Queensland franchise manager at Century 21, Glenn Stanton.

It's been a meteoric rise over the past few years for Billy Mitchell

$40million hotel, shops development project for Mackay

Mt Pleasant hotel and retirement accommodation, proposed at 194-202 Malcomson St.

$40m development to take Mackay to 'the next level'

Huge Gunalda service station set to open by December

NEW STATION: The Gunalda Service Centre, owned by United Petroleum, will include a 350-seat eating area and a truckers lounge.

The massive servo is the biggest United development in Queensland.

Highway upgrade drives momentum in affordable market

Accessibility and affordability are keeping interest high