Family’s desperate plea for lifesaving drug to become available Australia as they prepare for gruelling international journey to save their sick toddler

Families with children suffering from a rare and deadly form of cancer are pleading with the federal government to give Australians access to a life-saving drug.

Neuroblastoma is a deadly disease that kills more children under the age of five than any other cancer. But a breakthrough drug called DFMO could save them.

DFMO has not yet been approved in Australia, so children like two-year-old Harris – called Hazzy by his family – must fly to the United States for treatment.

The long journey is both expensive and risky for children who already have weakened immune systems, with Hazy’s pAren’t Tyler and Alix the ones pressuring the government to grant them access to DFMO before it’s approved in Australia?

“We don’t understand why it can’t just be available here for us and why we can’t just go to the hospital where we’re going anyway,” Alix told A current issue.

“It just seems so ridiculous.”

Tyler said Hazzy is “an absolute legend” but he shouldn’t have to leave the country to receive the medicine he so desperately needs.

“We fly (to the US) to go to the hospital, pick up those pills and take them home, five or six times a year, with a child that sick. And what that trip could do to him is completely incomprehensible to us,” said Tyler.

Tyler said it’s a “terrible time” for his family, but DFMO is helping them.

“(Hazzy) has dealt with this and you look at him today and you realize it’s worth it,” he said.

The toddler was diagnosed with neuroblastoma just before his and his parents’ first birthday knows that the risk of relapse is very high unless he has access to the drug.

The family moved from Hobart to Melbourne to get better access to the help Hazzy needs, but that doesn’t include DFMO.

“You have no choice but to just stay together and take home a little boy who is happy and healthy,” Alix said.

“It’s a full-time job for both of us just taking care of him.”

The family moved from Hobart to Melbourne to have better access to the help Hazzy (pictured) needs, although this does not apply to DFMO

The federal government is considering funding the cost of travel abroad for families who need to travel to countries in the United States for treatment.

However, Hazy’s parents want approval for the drug to be approved quickly so that immunocompromised children do not have to travel for treatment.

“(We’re talking about) kids five years old and under, just trying to stay alive,” Tyler said.

“How can this even be a question? (Not allowing the drug in Australia) makes no sense.”