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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."

Topics:  disease editors picks health

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