A furious mother whose son is facing deportation from Australia because he has a chronic illness has shared fears her family will be “torn apart”.
British-born Laura Currie and her Italian partner Dante Vendittelli have built a life together in Perth after meeting in Brisbane five years ago.
The pair welcomed their son Luca in November 2021, as the couple were midway through their permanent residency application.
However, just six weeks after little Luca’s arrival, the parents discovered their firstborn had cystic fibrosis, a genetic disease affecting the lungs and digestive system.
Despite the fact Luca, now two-and-a-half years old, is a “very happy” boy who takes his illness in his stride, the family’s lives have been turned upside down after the government decided the potential cost of his treatment is too much for taxpayers, and declined Luca’s visa application.
Ms Currie, a child educator from Scotland, said the family love their life here and are desperately appealing the decision, describing the move as “heartbreaking”.
“We’re angry now, at the start I just cried and cried and cried as I kept visualising what life would be like if we have to leave,” she told news.com.au.
“But the thing is, if they do deport us, they are sending us to two different countries, so they’re splitting our family up.
“Dante can’t go to Scotland and Luca and I can’t go to Italy. So they’re literally tearing us apart. It’s so upsetting to think about.”
The worried mum, 33, said the family is now “living in limbo” after spending their savings – money they’d hoped to use to buy their first home – on an immigration lawyer who has lodged an appeal.
The couple moved to Australia separately, initially entering the country on different visas before Ms Currie became a defacto on Mr Vendittelli’s working visa, obtained through his employment as a construction worker.
While pregnant with Luca, the couple lodged a joint residency application, unaware that their baby would be born with a chronic health condition.
“We’d never even heard of cystic fibrosis before Luca was diagnosed,” the mum explained.
“Even though it is genetic, no one in either of our families as far back as we can trace, has ever had the condition.
“We’d actually paid for a non-invasive prenatal test that checks for any abnormalities while pregnant and it came back all clear.
“But unfortunately it doesn’t test for genetics. So Luca’s diagnosis was a huge shock.”
It was a routine heel test performed on newborns, usually between 48 and 72 hours after a baby is born, that led to Luca’s health discovery.
“To find out your baby has a chronic, and life-limiting disease, was a massive blow,” Ms Currie continued.
“But as if the journey of learning about cystic fibrosis, and what that means in terms of day-to-day life for Luca, wasn’t hard enough – we were then slapped with the possibility that we could lose our right to live in Australia.”
Ms Currie said it took two years for the family to hear back regarding their visa status, after Luca had a health check at aged six-months-old, and another a year later.
“We got an email in February Luca’s visa had been rejected, after we’d sent documents in regards to why we believe it shouldn’t be, including letters from his health care team and even Cystic Fibrosis WA who I fundraise for ever year,” she said.
“But the issue comes down to the cost of a medication called Trikafta, which Luca doesn’t take yet, and we’re not even sure if he is compatible with it.”
Trikafta has been billed as a “lifesaving treatment” for those living with the lung condition, that according to the TGA, is “indicated for the treatment of cystic fibrosis in patients aged 6 years and older”.
The treatment is on the Pharmaceutical Benefits Scheme, bringing its price down to $42.50 per script, but without the discount, it soars to $250,000 a year.
Based on this, the official estimate for Luca’s medical bill is $1.82 million over 10 years, the BBC reported, money the government is not prepared to pay despite the toddler being born here.
Ms Currie said: “It’s heartbreaking, there’s a lot of emotions and anger, it’s not even about us really, it’s about a two-and-a-half year-old-boy who didn’t ask for any of this. How can anyone do this to a defenceless child?”
She continued by stating the family feels “let down, unwanted and unwelcome” by the country they have called home for eight years.
“We’ve paid into the economy, we’ve paid our taxes, and we just feel like we’re not wanted here, which is a horrible feeling for anyone to go through,” she said.
“At the supermarket I’ll see somebody looking, and I know they’re staring because they’ve seen us on the news, and it makes you think the worst.
“Our back is up against a wall, which is why we’ve gone public, but it’s not been easy. Luca is known locally now as the ‘sick little Perth boy’ and it just breaks my heart.
The Department of Home Affairs said it could not comment on individual cases when contacted by news.com.au.
When determining whether an individual meets the visa health requirements, “health and community costs above $86,000 or more are regarded to be significant”, a Departmental spokesperson said.
This is defended by the government as a necessary way to curb government spending and protect citizens’ access to healthcare, a report by the BBC states.
It says these visas aren’t technically rejected, but neither are they granted. Some can apply for a waiver, although not all visas allow it. They could also appeal the decision but the process can be expensive and drawn out.
Campaigners argue it is discriminatory and doesn’t align with modern attitudes towards disability.
