JEANS for Genes Day is a cause close to the heart for a Gladstone family, after their bouncing baby boy fell critically ill four weeks ago.
After being rushed to the Royal Children's Hospital in Brisbane, Tyler Batterham, now 12 months old, was placed in ICU for a week and then had to stay on in Brisbane for a further couple of weeks.
Tyler's mother Chantelle Davies said at the time doctors didn't know what type of future he would have or whether any brain damage had occurred.
Diagnosed with an extremely rare genetic metabolic condition called malonic aciduria, Tyler is now in a stable condition and back smiling in Gladstone.
"They hadn't seen a case like it down there," Ms Davies said.
"He definitely surprised them all."
Tyler's condition is a one in 19.5 million rarity and means he will require ongoing treatment for the rest of his life.
If everyone just puts in a dollar, that money goes a long way to help people like Tyler
Ms Davies said that at the moment the genetic condition is screened for during newborn testing in the USA.
He's the only child in Australia on his specialised formula, and his parents will have to take extra precautions with his diet and ensure he doesn't fall ill.
"I would like to find out about how to get the heel prick test here in Australia," Ms Davies said.
At the moment Tyler's family don't know what the future will hold, as there has not been a lot of research on it.
There are a few people in Melbourne that have a similar condition to Tyler, so his family is currently trying to get in contact with their families.
Aunt Michelle Kiss is holding a morning tea at her workplace, the Central Queensland Institute of TAFE Gladstone campus, on Friday to help raise awareness for genetic diseases and to encourage people to donate money to assist in children's medical research.
"If everyone just puts in a dollar, that money goes a long way to help people like Tyler," Michelle said.
There will be merchandise available and a donation box for Tyler's medical fund.
Michelle encouraged other people to host an event for Jeans for Genes Day and said if people wanted to donate to Tyler's medical fund they could do so at either of the Commonwealth Bank branches in Gladstone.
Jeans for Genes Day
- Jeans for Genes Day is on Friday, August 7
- It's a day when workplaces, schools and streets across Australia will be awash with denim in a united stance against childhood disease.
- 2013 is the twentieth anniversary of the event.
- To register an event visit jeansforgenes.org.au to receive Jeans for Genes donation boxes and promotional posters.
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