Keyhole miracle unlocks a new life
Published: July 14, 2006
TOM LeRay-Meyer was once so racked by seizures he could not hold a golf club, let alone sink a putt.
Fits ranging from mild to incapacitating would strike the young boy every 30 minutes, damaging his brain and making his life unpredictable.
Tom had epilepsy, but specialists could not pinpoint the cause — until he was admitted to the Royal Children’s Hospital where neurologist Simon Harvey discovered Tom would laugh at the end of his seizures.
It was a telltale symptom of a rare congenital defect called hypothalamic hamartoma.
Children with the condition have a lump of extra brain tissue buried deep in the middle of their brains, which triggers seizures, imbalances mood and damages intellect. It affects only one child in 800,000.
In 1997, aged four, Tom had keyhole brain surgery that changed his life forever.
He was the first child in the world with hypothalamic hamartoma to have the pioneering surgery.
The complex operation was risky and Tom faced more brain damage if any healthy brain tissue was removed accidentally.
But to the joy of his parents, Tony and Alison, Tom’s seizures stopped within 48 hours.
“The operation was nothing short of a miracle,” Mr LeRay-Meyer said.
“It was like seeing one child before the operation and a different one afterwards.”
Since Tom’s operation, 50 children from Australia and overseas have had the same surgery.
Tom, now 13, lives in NSW and is a confessed “golfaholic”. He averages 53 off nine holes and last year was selected to compete in the Special Olympics for athletes with intellectual impairments.
His talents were also rewarded with a $2500 scholarship from Variety Children’s Charity.
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