Teen with rare disease fighting for help on birthday

Teen with rare disease fighting for help on birthday

A Gold Coast teenager with a rare genetic disorder is not only fighting for her life, she's battling the government to subsidise the only drug that can treat her condition.

Bianca Scott turned 18 today and she says all she wants is a chance at a normal life.

But instead of planning a party, this 18-year-old is doing media interviews trying to raise funds for a life saving treatment.

Bianca suffers from aHUS - a rare genetic blood disorder.

"I want to have a place in this world and I don't think I'll be able to without this medicine," she told 7News.

"It's so rare they actually label it as an ultra rare disease.

"Ten per cent sadly die within the first year of their attack and the other 90 per cent die within 5 years."

There are only 70 other people in Australia with the condition, including Ashley Grey who's also celebrating a birthday today.

Their birthday wish is for a drug called Soliris to be subsidised by the Government. It's the only medicine that can treat aHus.

"It stops aHus from coming back again, that's a proven fact,” Bianca’s mother said.

Bianca needs four doses of Soliris every two weeks at a cost of $24,000. Her family can't afford any more treatments they're now relying on donations..

The Federal Government says it is negotiating with the drug company to make Soliris available on the pharmaceuticals benefits scheme.