She turned 18 on Monday.
Young, vivacious, and gorgeous — her life should be spread out in front of her ready and waiting.
But the gift she so desperately wants for her birthday will cost $24,000.
You see, Bianca Scott is dying. She has a rare kidney disease and the drug she needs to save her life is too expensive to afford.
Bianca is in kidney failure after being diagnosed with a genetic form of atypical Haemolytic Uraemic Syndrome (aHUS). She was diagnosed with the disease when she was just seven months old but it lay dormant until she finished high school last year.
“’I couldn’t keep any food down, I was always vomiting, I couldn’t stand up, I’d feel very dizzy, I had fevers… sadly I have chronic kidney failure now,” She told the TODAY show.
Bianca is one of only about 60 Australians estimated to have the disease – and the cost of the drug that can help her, is $18,000 a week.
$500,000 for a year’s supply.
Soliris is the only known treatment for the disease and is known as the world’s most expensive drug.
Bianca and her mum initially used up all their savings to fund the drug, but her mother had to leave her job in order to care for Bianca.
A fund raising site was set up to help the family, but what her Mum says they need above all else is for the Federal Government to intervene.
Her mum, Tammy Hamawi, told The Courier Mail that things are getting desperate as they do not have the money to buy their next dose. Her old high school, All Saints Anglican College, donated most of the funds for her most recent dose and an anonymous donor paid for the rest, but raising enough cash is a constant stress.