Thomas Olive died at age 4 from a gene mutation which destroyed his muscles. Photo Contributed
Thomas Olive died at age 4 from a gene mutation which destroyed his muscles. Photo Contributed Contributed

'He died after breakfast': growing hope after Tom's death

FROM little things, big things grow.

Mooloolah Valley's Andrew and Trudy Olive hope a lilly pilly plant variety - developed by Andrew - will raise money to help raise awareness, and one day even a cure, for the rare genetic condition that claimed the couple's son Thomas five years ago.

Tom was a healthy little boy who woke up one morning, ate breakfast and two hours later died in front of his mum and dad.

The Sunshine Coast tot was killed by a mystery illness that tests have not been able to shed any light on.

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Little Tom lilly pilly is available at Bunnings, Masters, Big W and will soon be rolled out across nurseries, with a 24.5 cent royalty attached to each labelled plant sold.

That money goes to the Shine for Thomas Foundation, which the couple set up after their son Tom died, aged four, from rhabdomyolysis from LPIN1 gene.

"The lilly pilly was a variety I grew from seed many years ago," Mr Olive, owner of Andy's Wholesale Plants, said.

"I collect seeds. I germinated 400 seedlings from lilly pilly and out of those 400, I noticed two were different.

"I kept one and gave one to a local grower and they were impressed with how it looked.

"After Tom's death, I told my friend I was looking for a name for this tree and he said, 'You have to call it little Tom'."

Mr Olive spoke to the Daily after the Shine for Thomas Foundation race day, which was held at Corbould Park on Sunday raising more than $7000 for the charity. He said although the plant variety was called "little" it could still grow more than three metres and was suitable for hedges.

Last month, 4000 were sold.

TOM’S LEGACY: Trudy Olive and her husband Andrew lost their little boy Thomas to a rare genetic disease five years ago. Andrew has developed a new type of plant called the little Tom lilly pilly, with proceeds going towards the Shine for Thomas Foundation.
TOM’S LEGACY: Trudy Olive and her husband Andrew lost their little boy Thomas to a rare genetic disease five years ago. Andrew has developed a new type of plant called the little Tom lilly pilly, with proceeds going towards the Shine for Thomas Foundation. Peter Evans

It is not yet known how many people across the globe are impacted by the life-threatening condition, rhabdomyolysis, and a little known genetic cause in children, LPIN1.

The Olives only know about 27 people worldwide, as that's the number of people who have contacted them.

However, in Australia two little boys called Thomas - Thomas Olive and Thomas Dean - died within 24 hours of each other in 2010 without prior diagnosed history.

The Olives knew there were three other Australian boys afflicted with the same condition within 30 days of each other, leading them to believe the condition isn't as rare as it has been suggested.

Their foundation aims at raising awareness about the condition and they hope that in the future testing, which is currently done in the US, France, the Netherlands and Pakistan, could be brought to Australia.

They have also donated to surviving sufferers of the condition, like Hudson Stokes, for whom they bought a $7500 walking frame with the proceeds of the last race day.

Visit shineforthomas.com.au for more information.



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