Brave family fights for hope
THE genetic axe of cystic fibrosis has swung twice in Phill and Cheryl Lukies' seven-strong brood.
Fifth-born Naomi's diagnosis was shocking, sixth-born Beau's heartbreaking.
``Last year Naomi was lying in her bed and she said to me, ``Mum, am I going to die?'' Cheryl whispers. The Grovedale mum's eyes pool with tears and a silver stream slips down her cheek.
``What can you say?''
Cystic fibrosis sufferer Naomi, 12, sits on her bed in Geelong Hospital and wishes for a ``different life''.
Normal to her is a hospital room, not her bedroom. Normal is scores of pills a day. It's physiotherapy sessions to loosen the load of mucus in her chest. And it's knowing that life will be cut short.
Younger brother Beau, 11, has a simple wish, too.
``Not to have cystic fibrosis,'' he says with a serious gaze. Beau's only had one hospital stay this year but he's watched. Naomi's has been a rocky journey and it frightens him. It may be his future.
Cheryl and Phill remember Naomi's dark years between 10 and 12 when her curious mind dug for knowledge on her inherited condition. The questions started. The answers were difficult to digest.
``It was a crucial time for her because we hadn't spoken much about cystic fibrosis . . . so when we talked about it, she didn't want to live, she just gave up,'' Cheryl says.
``It was hell, absolute hell. She wouldn't even take her medicine.''
Phill passes tissues to his wife. He's calm but he's hurting, too.
``Two days before Christmas the local pediatrician came in and had a chin wag with us and told us if Naomi didn't start having her medication properly, going to school, socialising then it could very well be her last Christmas,'' Phill says.
``Naomi said she didn't want to die. And with that she turned around 100 per cent.''
But winter weather blows in more than chilly breezes. It heralds colds and coughs that serve up chest infections and hospital stays for Naomi.
The young girl, in the children's ward for a three-week ``tune-up'' to control chest infections, spent most of last year in Geelong Hospital and less than three weeks at school.
Naomi reckons hospital is ``boring''. Her smile switches to high beam when she talks of her loves - latest Popstars winner Kayne Taylor and shopping.
Taylor's CD cover, worn from constant contact, is in her hand and her eyes shine. She's a typical 12-year-old girl for a split instant.
``He's hot,'' she declares. ``I still like Shannon Noll, too.''
A few minutes later she's off with Beau for a physiotherapy session, their voices echoing down the children's ward corridor.
Cheryl and Phill smile at the sound.
``Naomi's very special, she deserves a better life than this,'' the proud mum says.
``If I had one wish myself, it would be to have a cure. Watching your children suffer is so hard.''
Medical researchers are yet to develop a cure. It's still in the future. But better management and treatment is extending and improving the lives of people with cystic fibrosis. Many now live into their 30s.
Beau is stronger than Naomi. The lad has spent four stints in hospital in his 11 years. He's got a love for gameboys, for drawing and cars. These coexist with the constants of daily medication and physiotherapy. The latter are his lifeline and he's holding on tight.
Phill and Cheryl love their seven children. They admit Naomi and Beau get more attention - it's not surprising given their health regimen.
``You love them even more because they are more precious and you don't know how long you'll have them for,'' Cheryl says, lips trembling with emotion.
``I'm not looking forward to the future . . . I put her to bed at night and hope she'll be awake in the morning.''
The parents decided Naomi would be their last child. But Beau and Sarah, now eight, followed.
They remember the joy of kissing newborn Sarah and detecting no salt on her skin, one of the signs of cystic fibrosis.
They also remember a simple question from Sarah three years ago that cut them to the quick. ``Mummy, can I have cystic fibrosis too?'' she innocently asked after watching her ill siblings get special attention.
Naomi is fed through a ``PEG'' in her stomach while a ``port'' in her upper chest carries antibiotics to her bloodstream. She regularly has to cough mucus from her lungs and may need a transplant in the future.
Geelong Hospital's Dr Mike Forrester says Naomi has improved since arriving at hospital almost two weeks ago for her latest stay.
``I never cease to be amazed by the things kids learn to cope with and their families cope with,'' the registrar says.
This life is normal to Naomi and Beau. Constant medication and physiotherapy and careful diet has been their lot since birth. They're facing the challenges with courage.
``Naomi'll be the first to put an arm around someone and say, `Don't cry, you'll get better','' her mum says.
``And she knows she'll never get better.''
Put out a hand and you can almost feel Phill and Cheryl's love and pride for their special kids. They call themselves battlers and they're right. Their kids are battlers, too.
``God only gives you what you can handle. He obviously thinks we are special parents to cope with special children,'' Cheryl says.
They know Naomi is locked in the fight of her life at the fledgling age of 12. They're backing her to the hilt.
``Then we look at Beau and think the future has more heartbreak,'' Cheryl says.
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