The Sunday Mail (Queensland)

No room for teen with rarest of dis­eases

- Brisbane · Cameron Dick · Third World

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

 ??  ?? BAT­TLING: Emmalle McCabe and her mum Ruth, with dog Lily. Pic­ture: Glenn Barnes
BAT­TLING: Emmalle McCabe and her mum Ruth, with dog Lily. Pic­ture: Glenn Barnes

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