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Mum's battle for life-saving drug

9News.com.au logo 9News.com.au 12/10/2018 Tanya Weingarth

At just 29 years of age, doting mother Kate McKenzie has faced more battles than anyone should.

When she was 20, the Brisbane woman was diagnosed with a rare genetic condition which causes tumours to grow all through her body.

Three years ago doctors discovered a cancerous tumour on her brain, linked to the condition.

a woman wearing a white shirt: Kate McKenzie has a rare genetic condition that causes tumours to grow all through her body. © Provided by Nine Digital Pty Ltd Kate McKenzie has a rare genetic condition that causes tumours to grow all through her body.

She had it removed and underwent chemotherapy and radiation and won that battle, only to have more non-cancerous tumours known as desmoid tumours riddle her body.

"They're all inter-abdominal which means they're on the inside of the bowel," Kate told A Current Affair reporter Pippa Bradshaw.

These bowel tumours are not operable and have been growing so rapidly, Kate has regular obstructions anda hole in her bowel.

Three years ago, Kate had a brain tumour removed. © Provided by Nine Digital Pty Ltd Three years ago, Kate had a brain tumour removed.

"It's now leaking into the blood stream and it has caused septicemia so that has been another big journey," Kate said.

What makes Kate's situation even more devastating is her family history with the condition.

Kate's mother, Wendy, died from the same tumours when she was just 27 years old, and Kate was just five months old.

a person standing in front of a box: The drug sorafenib is not covered by the PBS for Kate. © Provided by Nine Digital Pty Ltd The drug sorafenib is not covered by the PBS for Kate.

"It's just crazy that it just keeps going down the chain and you know we're here almost 30 years on and what have we done in Australia to help people, we haven't done anything on this," Kate said.

Doctors have told Kate her only option now is a drug called sorafenib which has proven to work on patients with desmoid tumours in America.

While Kate has started taking the drug, it's not cheap, costing around $100,000 a year or $3500 a box.

a couple of people posing for the camera: Kate and her husband Brendon are fighting to get Kate's treatment included in the PBS. © Provided by Nine Digital Pty Ltd Kate and her husband Brendon are fighting to get Kate's treatment included in the PBS.

"$3500 a month, is not even my monthly salary," Kate's husband Brendon said.

The drug is listed on the Pharmaceutical Benefits Scheme, but only for patients with liver cancer.

Kate and Brendon have recently started a petition, pleading with the government to expand the PBS subsidy of the drug to those with desmoid tumours.

a person standing posing for the camera: Kate wants to be able to see her little girl go to school. © Provided by Nine Digital Pty Ltd Kate wants to be able to see her little girl go to school.

It's already garnered around 20,000 signatures but has so far been unsuccessful in swaying the government.

"You get one department and they say to contact another department, and then they tell you it's the other," Brendon said.

In a statement to A Current Affair, a spokesperson for the Federal Department of Health said it is up to the drug supplier to make a submission to the government for the drug to be added to the PBS for people with desmoid tumours.

a person eating a donut: Lucia, five, may be carrying the same genetic mutation as her mother. © Provided by Nine Digital Pty Ltd Lucia, five, may be carrying the same genetic mutation as her mother.

The family is now fundraising for the drug through this website.

Kate and Brendon are realistic that if the drug does make it onto the PBS for people like Kate, it could well be too late for her.

However, it may help others, including their five-year-old daughter Lucia, who could be carrying the same genetic mutation, but can't be tested until she's 12.

"I have two goals in my life right now, my first goal is to see my little girl go off to school next year when she goes through prep, and I also want to turn 30," Kate said.

Kate's petition can be found here.

You can follow Kate's journey on Facebook.

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