For Oscar Rose, nothing beats the feeling of kicking goals on the footy field.
The 10-year-old was born with achondroplasia, the most common form of dwarfism.
His parents Hanna and Danny say he had a tough first 12 months of life, in and out of hospital with recurring seizures and breathing difficulties.
Since enrolling in a trial of the drug Voxzogo five years ago, Oscar is now growing at the same rate as other children his age, and it’s reduced his health complications.
“It means he will have a life that will be pain-free, he won’t need surgery again,” his mother Hanna told 9News.
From next month, Voxzogo will be listed on the Pharmaceutical Benefits Scheme, slashing the price from $330,000 a year to $30 a script.
It will make life easier for Naoko Abe, who’s found it cheaper to fly her son Ari to Japan for treatment every fortnight.
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“The bank account balance has gone low, but you know, you do it,” she said.
“As a parent, you’ll do anything for your child.”
Professor Ravi Savarirayan said dwarfism doesn’t just affect height, it also puts pressure on spinal cords and leads to other life-long complications.
He said the drug is a game-changer for those born with achondroplasia.
“In this form of dwarfism, it’s like trying to drive your car with your handbrake on,” Savarirayan said.
“It can’t reach average speeds and so the bones can’t grow normally.
“This medication releases that handbrake from a molecular point of view, and allows average bone growth to resume.”
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