Three-year-old Sonny denied eye treatment available to children in Melbourne
Three-year-old Sonny has Batten disease. His parents fight to access eye treatment. It is available in Melbourne but denied in Queensland.
Sonny was healthy until he stumbled during a hospital visit. Genetic testing confirmed Batten disease, an incurable brain disorder that will rob him of speech, movement, vision and eventually his life.
Sonny has already lost speech. Sonny's type is CLN2.
CLN2 is the only form with treatment. The drug is called Brineura.
A port in his skull delivers it to slow decline. But Brineura cannot reach the nerves in his eyes.
A barrier in the blood-retina system blocks it. An off-label eye infusion can slow vision loss.
It lets Sonny see his parents' faces and the world. Children in Melbourne already receive this treatment.
Queensland Children's Hospital says eye injection is not yet approved under the federal Life Saving Drugs Program. The hospital is assessing safety and effectiveness.
But it has not committed to starting the program.
- 3 years old
- Age
- CLN2 Batten disease
- Disease type
Why it mattersIdentical treatment is available in Melbourne but denied in Queensland. This raises questions about fair healthcare access. Should a child's postcode determine what life-saving care he receives?
Corroborated bytheage.com.au·watoday.com.au
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