Perth girl Lenna Housseini diagnosed with extremely rare and aggressive cancer

A simple question at the dinner table about a bump on five-year-old Lenna’s neck changed the Housseini’s lives forever.

“Does it hurt when I press it” her father Amin asked.

It didn’t. That’s because the lump is an extremely rare and aggressive cancer known as MRT or Malignant Rhabdoid Tumour.

The tumour at the base of her tongue is so rare it hasn’t been seen in Australia in decades.

It’s so aggressive, Lenna has gone from being a happy and healthy five-year-old to having a life-threatening condition in three months.

There’s only a 40 percent chance the little girl from Melville will survive and if she pulls through, she will struggle to speak.

Her parents had their bags packed last week to take her to the United States for cutting edge treatment. Her Perth doctors had recommended her for Proton Therapy in Florida.

But they were knocked back by the Federal Government’s Medical Overseas Treatment Program, as the cancer is so rare, there’s not enough evidence the overseas treatment will be successful.

Her parents could try and raise half a million dollars to send her privately, but it’s too late. It would take weeks to reapply, and Lenna simply doesn’t have that long.

“It’s too late to complain, it’s too late to do anything, it’s too late to even have the regret, because we don’t have time to have regret, we have to stay positive,” Amin Housseini said.

Fundraiser by Friends of the Hosseini’s : Light to Lenna

What is Proton Therapy?

The Proton therapy offered in the US is precise, it can pinpoint a tumour and kill only the cancer cells.

It’s often used in small children and for cancers in the head, spinal cord, and heart, where there are vital organs.

The x-ray radiation we have in Australia, is more rudimentary. The larger beam kills the cancer, but also the healthy cells around it.

It could save Lenna’s life, but there’s a risk of lifelong disability.

The 6cm tumour is at the base of her tongue, meaning parts of her jaw and tongue will be affected by the radiation and that will affect her speech.

“Her jaw may not grow in the future, as naturally,” her mother, Mahsa Shafiei, said.

“It’s going to affect her tongue and all the cells in her tongue, and she might not be able to move it.”

Is Proton Therapy planned for Australia?

The rejection from the Medical Overseas Treatment Program is heart-wrenching. But it’s a decision the body should never have had to make.

In 2017, the federal government announced it’ll build the $500 million-dollar Australian Bragg Centre for Proton Therapy in Adelaide.

There’s a custom bunker 16m underground made to hold the machine, but it’s empty.

Last year the Health Department and South Australian government tore up the contract American company building the machine.

They had spent tens of millions in progress payments, but there were funding disputes and little progress. Ultimately the State and Federal government’s lost confidence in the manufacturers ability to deliver.

Federal Health Minister Mark Butler telling 7NEWS his government is still committed to bringing Proton Therapy to Australia.

“A proton therapy unit is a really important part of the suite of cancer treatment options, particularly for kids, but over time for adults, here in Australia,” he said.

“The South Australian Government is doing the lead work to see whether another type of unit from another supplier can be sourced.”

But those contract negotiations are starting from scratch and meaning Australian Proton Therapy is years, if not decades away.

Time five-year-old Lenna does not have. Her family now focusing on the basics as she goes through radiation here in Perth.

“Eat, drink and smile” Lenna said are her goals for each day.