Perth girl diagnosed with rare and aggressive cancer knocked back for treatment overseas
Lenna Housseini was diagnosed with Malignant Rhabdoid Tumour, or MRT, following the discovery of a tumour at the base of her tongue.
It was also slightly noticeable on her neck.
MRT is so rare it has not been seen in Australia in decades — but it is aggressive too.
In three months, Lenna has gone from being a happy and healthy child to having a life-threatening condition.
There is only a 40 per cent chance the little girl from Melville in Perth's southern suburbs 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, which helps Australians with life-threatening medical conditions access treatment overseas when it is not available in Australia.
The reasoning? The cancer is so rare, there is not enough evidence the overseas therapy will be successful.
Her parents could try and raise $500,000 to send her privately, but it is too late.
It would take weeks to reapply, and Lenna simply does not 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,' her father Amin Housseini said.
What is proton therapy?
The proton therapy offered in the US is precise and can pinpoint a tumour and kill only the cancer cells.
It is 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 is a risk of lifelong disability.
The six-centimetre tumour is at the base of her tongue, meaning parts of her jaw and tongue will be affected by the radiation.
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 is a decision the body should never have had to make.
In 2017, the federal government announced it would build the $500 million Australian Bragg Centre for proton therapy in Adelaide.
There's a custom bunker 16 metres underground made to hold the machine, but it is empty.
Last year the Health Department and South Australian government tore up the contract of the 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 lost confidence in the manufacturer's ability to deliver.
Federal Health Minister Mark Butler told 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 means Australian proton therapy is years, if not decades, away.
It is time Lenna does not have.
Her family is focused on the basics as she goes through radiation here in Perth.
'Eat, drink and smile' Lenna said her goals are for each day.
GoFundMe has been launched to help the family with ongoing costs.
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