Bowen, a young Melbourne boy who suffers from Hunter Syndrome desperately needs access to the life saving drug, Elaprase but has been denied it.
The drug is available to other young children such as Beaconsfield’s Jimmy Webber. It halts the relentless progression of the crippling disease and gives children with the condition a second chance at life.
Bowen’s future depends on a meeting with the Prime Minister.
The upcoming Community Cabinet Meeting in Emerald provides the opportunity for the family to personally plead its case with the Prime Minister.
Federal Member for La Trobe, Jason Wood, has written to Prime Minister Rudd to meet with the family and personally intervene.
“This is the best chance the family will ever have to put Bowen’s case directly to the Prime Minister. I want to ensure that they get the opportunity,” said Mr Wood.
Bowen was originally hailed as a “poster boy” for access to Elaprase. He has been denied access to Elaprase due to the results of a neuro-psychological test which other children have not had to undertake.
“The unfairness of this decision is breaking the hearts of Bowen’s family and denying him his right to life,” Mr Dutton said.
“The Prime Minister is the person who can help Bowen.”
Elaprase was funded as a life saving drug in 2008 for 11 young Australians. Bowen Rule fully expected to be included in this group. Seven of the young sufferers have been offered treatment so far. Four still await the chance.
Media Contact: Taryn McDonald 0402 102 144