Family gears up to fight killer disease
LAURA Olive was only three when her big brother Thomas died but she still draws pictures for him every day.
Like her parents, Andrew and Trudy, she finds the angelic-faced little boy is never far from her thoughts.
On August 25, 2010, Thomas Olive woke up an apparently healthy little boy, ate breakfast and two hours later died in front of his mum and dad.
His four-year-old body basically turned on itself as a little-known muscle-destroying gene mutation took hold.
Thomas was Australia's first known victim of rhabdomyolysis and the Olive family is determined to ensure no other parents ever have to live the same nightmare.
"We think about him all the time, but you have to quarantine your thoughts sometimes and block it out to some degree," Mr Olive said.
"If I thought about him all the time I just wouldn't get anything done.
"We just consider ourselves lucky to have had Thomas and we are grateful to have loved him while he was alive for nearly five years.
"Some parents don't even get that."
Mr Olive and his wife Trudy are determined to hoist rhabdomyolysis out of the shadows.
As they prepare to celebrate Christmas with their girls Laura, 5, and Sarah-Rose, 18 months, their thoughts often turn to Thomas and the busy year ahead.
The couple is in the process of establishing the Shine for Thomas Foundation, which will hit the ground running next year to raise awareness of the symptoms of the condition, lobby government and provide assistance for families and children with the illness.
"This is a rare condition, but it isn't rare to us," Mr Olive said.
"It isn't rare for the parents who have lost a child.
"We are taking baby steps. We have raised enough money for public liability insurance. We are registered as a tax-deductible donation charity and are looking at launching in the new year.
"This is the first bullet in the war against the illness."
Thomas was the world's ninth known case of death caused by rhabdomyolysis when he died and the first in Australia.
More cases have became apparent through parents connecting to the Shine for Thomas Facebook page.
"The law of probability shows this could just be the tip of the iceberg," Mr Olive said.
"My heart tells me that there are kids walking around as ticking time bombs."
Warning signs of rhabdomyolysis include muscle pain, discoloured urine and unexplained lethargy.
Attacks can be triggered by exercise, missed meals, infections or fevers.
Mr Olive hopes that as the foundation grows, so too will household conversations about the killer condition.
"We want to send a warning letter out to every child care centre in the country to pass on to parents regarding the symptoms," he said.
"We are not going to wait for the medical world to train their doctors and nurses.
"We need to catch this early."
The Olives have received wide support for their efforts, including help from Daniel Morcombe Foundation board member Peter Boyce.
A recent raffle raised $2500 towards the cost of public liability insurance.
The LPIN1 gene is hereditary and testing is available only in France.
Blood samples were sent off for Laura and Sarah-Rose to see if they had inherited the gene. Laura was given the all clear but 18-month-old Sarah-Rose tested positive to double mutation.
Mr and Mrs Olive will monitor her closely and probably home school her.
"The pain doesn't go away but it drives me to know that I can try and save another family," Mr Olive said.
"I will have satisfaction when I can shake a father's hand when he thanks us for saving his child's life."
Shine for Thomas Foundation
Bank of Queensland
BSB: 124 072
AC Name: Shine for Thomas Foundation Inc