GLADSTONE boy Damon Muller used to ride his bike and play in the backyard like other kids.
Now he's dealing with a rare and life-threatening disease.
Damon, 11, has juvenile dermatomyositis, an autoimmune disease where the body's immune system mistakenly attacks its own muscle, skin and tissue.
It started when his mum noticed a rash on her son's ears and legs last September.
"We were in a pool in Brisbane and I noticed his ears were bright red, but he wasn't burnt," she said.
"The next day it came back but I didn't think much of it. We went to the doctor and he said Damon had lupus.
"On November 3 we were told he had an autoimmune disease called juvenile dermatomyositis.
"I had to ask the doctor five times to pronounce it."
The condition affects between two and four children per million in the US each year. The number of cases in Australia is unknown.
A search on the internet shocked Damon's mum.
"The muscles closest to the trunk of your body are affected," she said.
"It's life-threatening because the GI track can have complications with swallowing and if it comes back you can get cancers as an adult.
"We are still wrapping our head around it."
Damon now has to take Prednisone steroids and a regular chemotherapy injection.
As a result of the steroids, Damon has a rounded face, increased weight, stretch marks and weak bones.
"He's gone from a tall, slim kid to me having to buy size small men's clothes," Ms Moynahan said.
The Year 6 student has been an inspiration to his mum, dad Daniel and younger brother Toby. "He's been amazing," Ms Moynahan said.
The family is trying to raise $15,000 to fly to Florida in 2016 for a conference with some of JDM's top doctors. They've raised $3030 so far and would be grateful for any donations from the community.
If you would like to donate to Damon's Hope For A Cure, head to http://www.mycause.com.au/page/91642/damonshope foracure.
What is juvenile dermatomyositis?
- Rare and life-threatening autoimmune disease in which the body's immune system attacks healthy tissue
- Begins in the childhood or teenage years
- Causes skin rashes due to inflammation
- It affects girls twice as much as boys
- Researchers believe environmental and genetic factors cause the disease
- There is no cure for JDM, but early diagnosis and aggressive treatment continue to improve
- Some will battle an array of serious complications, resulting in the inability to walk, ongoing pain, disfigurement and even death
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