Reggie Sorensen’s son Lucas has been fighting for his life since he was born, and he’s had his mum right by his side, hoping and praying his damaged lungs will keep working.
Born with cystic fibrosis (CF), Lucas has spent more time in hospital than out in his nine years, his life expectancy was low and his constant visits to hospital have meant he regularly misses school.
But last week the family received news that life-saving CF drug Orkambi had been added to the pharmaceutical benefits scheme (PBS), finally making it affordable.
Reggie Sorensen with son Lucas and daughter Mia.
Reggie is over the moon – it means Lucas will get to blow the candles out at his 21st birthday, something the family never thought possible.
“I can’t believe it – I was watching it live-stream on the TV and I just cried and cried. Even better, it was two days before Lucas turned nine! That’s the best present he could’ve hoped for,” she tells Woman’s Day.
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“This will be life-changing for many cystic sufferers. Long overdue, they finally get a chance to breathe better.”
The Federal Government decision means everyone who suffers from the chronic condition, which affects every part of the body, including the lungs, will receive the miracle drug at a drastically reduced cost.
“Previously, it cost $250,000 a year for patients,” explains Reggie.
“It will now cost $6.50 a month, and as a single mum-of-two, I can now give my boy what he deserves.”
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Reggie, pictured in 2016 with daughter Mia and son Lucas strapped into his breathing machine, is campaigning tirelessly to raise awareness for cystic fibrosis.
“His big sister Mia asked me what this means – I said it gives your brother at least another 23 years with us!”
“That’s going to be one very big party when my little warrior turns 21 – something we never dreamed would happen.”
Reggie, who won Big Brother in 2003, struggles to make ends meet these days and is also battling her own health problems. In December, doctors found a hole in her heart, and she’s also losing her sight.
“It gives your brother at least another 23 years with us,” Reggie told her daughter.
Reggie admits she could never have afforded the miracle drug until now.
“Lucas’ quality of life is about to improve twentyfold,” she says.
“I can’t wait to watch him soar. The little fella deserves a break – he has so much now to live for, and as his mum that just makes my heart sing.”
