Reggie Sorensen is fast losing her sight, but before she can no longer see her two beautiful children, the lovable reality star wants to know her desperately ill son Lucas has the best possible chance in life.
“I’m afraid my little boy will die before a cure is found for cystic fibrosis [CF],” she told Woman’s Day, fighting back tears at her modest Gold Coast home as she cradles Lucas in her arms.
“He only asked me yesterday, ‘Mum, would you rather be able to see or for me to get better?’”
“I said, ‘Mate, my little man, I’ve already seen everything, but you, my lovely, you need to know and feel what it’s like to be well and healthy – so of course I’d want you better!’ ”
Reggie is so proud of Lucas’ bravery.
The seven-year-old wishes he was at school with his friends.
Reggie suffers from retinitis pigmentosa, a degenerative eye disease slowly sending her blind.
Life has been pretty tough for the former TV star, but she shrugs off her own disability and disappointment at what fate has dealt her to focus on Lucas, seven, and his big sister 10-year-old Mia.
“Lucas has more courage than the entire front row of his beloved Gold Coast Titans footy team,” she explains.
“He’s been rushed to hospital every two weeks this year with major complications after he was fitted with a feeding tube. He’s always nauseous but he never complains. He’s an inspiration to us all.”
The 43-year-old credits his fighting spirit as the source of what keeps her positive in her dark moments, especially when she feels she has little to smile about.
“I wake up every day and pray this isn’t the last day I’ll actually be able to physically see my kids,” she says.
“Imagine the fear, closing your eyes to darkness then waking up wondering if it will be dark forever.”
14 years ago Reggie won the hearts of the nation, after taking out Big Brother.
The selfless mum-of-two told us as much as she hates her own disability, her heart breaks watching Lucas struggle to eat and breathe because of the severity of his CF.
The seven-year-old has put on just 3kg in three years, and at less than 20kg is half the weight of his schoolmates.
“Poor little thing,” she says.
“He’s never been so sick and he was so excited about going into grade two but he’s missed two months already. He just wants to be like the other kids, and I’d love to be a normal mum but I never will be. All I can do is love and care for them as best I can.”
CF has no cure and sufferers have a life expectancy of just 37.
Reggie is hosting a fundraiser to assist with Lucas’ care and asks the community for help. Woman’s Day has kicked things off with a donation and you can help too. Visit gofundme.com/love-lucas-fund-raising-event
May is cystic fibrosis awareness month. Take part in the “65 Roses” challenge at http://www.65roses.org.au/
You can read Reggie’s full story, plus see the brave family’s incredible photo shoot by picking up a copy of this week’s magazine, currently on stands!
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