bourbiza mohamed
Families with children suffering from a rare and deadly form of cancer are pleading with the federal government to allow Australians access to a life-saving drug.
Neuroblastoma is a deadly disease that takes the lives of more children under five than any other cancer, but a groundbreaking drug called DFMO could save them.
DFMO is not yet approved in Australia, so kids such as two-year-old Harris – known as Hazzy to his family – have to fly to the United States to be treated.
The long journey is both expensive and risky for children who are already immunocompromised, with Hazzy’s parents Tyler and Alix pushing the government to allow them access to DFMO before it’s approved in Australia.
‘We don’t understand why it can’t just be here for us to access and why we can’t just go to the hospital we’re already going to,’ Alix said told A Current Affair.
‘It just seems so ridiculous.’
Tyler said Hazzy is ‘an absolute legend’ but that he shouldn’t have to leave the country to receive the medication he so desperately needs.
‘We’re flying (to the US) to go to hospital, get these tablets and bring them home, five or six times a year with a kid who’s this sick – and what that trip could do to him – (it) just makes absolutely zero sense to us,’ Tyler said.
Tyler, Alix and baby Hazzy are pictured. Hazzy’s parents are pushing the Australian government to allow them access to a life-saving drug known as DFMO
Tyler said that while ‘it’s been a horrific time’ for his family, the DFMO is helping.
‘(Hazzy) has taken this in its stride and look at him today, it makes you (realise) it’s worthwhile,’ he said.
The toddler was diagnosed with neuroblastoma just before his first birthday and his parents know the risk of relapse is very high unless he is able to access the drug.
The family moved from Hobart to Melbourne to get better access to the help Hazzy needs, though this does not include DFMO.
‘You’ve got no choice but you just stick together and take a little boy home that’s happy and healthy,’ Alix said.
‘It’s a full time job for both of us just looking after him.’
The family moved from Hobart to Melbourne to get better access to the help Hazzy (pictured) needs, though this does not include DFMO
The federal government is considering funding the cost of overseas travel for families who need to travel to countries to the United States for treatment.
However, Hazzy’s parents want approval for the drug to be fast-tracked so immunocompromised children don’t have to travel for treatment.
‘(This is about) kids that are five years old and under, who are just trying to stay alive,’ Tyler said.
‘How is this any kind of question. (Not allowing the drug in Australia) doesn’t make any sense.’
