The Sunday Mail (Queensland)
No room for teen with rarest of diseases
EMMALLE McCabe has a disease so rare it does not yet have a name.
At 15 she dresses in the clothes of an eight year old – yet has the bone density of an 80-year-old.
Emmalle suffers a wasting disease not unlike cystic fibrosis. Only 35 other people in the world are known to have it. It means she is unable to properly digest her food. Emmalle, from Deception Bay north of Brisbane, is kept alive by a formula of proteins and nutrients pumped through a nasal tube.
Her mum, Ruth McCabe, was astonished when she was told by doctors at Lady Cilento Children’s Hospital that there weren’t any beds and Emmalle would have to wait three months to have her new tube fitted.
“What are we, a Third World country?” she said.
Emmalle eventually got her new tube at Mater Children’s. The McCabes are privately insured and have a special health card yet got a $400 bill for the formula, with the warning they would have to pay $400 every month. “We simply can’t afford that,’’ Mrs McCabe said.
She spent a month on the phone to Lady Cilento and the Mater warning that the formula was running out. Mrs McCabe was frantic when she rang The Sunday Mail. We contacted Health Minister Cameron Dick. A month’s supply of the formula arrived at the McCabe house by taxi the same day. Emmalle has an appointment with a specialist tomorrow. DES HOUGHTON