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Cystic fibrosis casts sad edge on hopeful Mother's Day

"MY perfect wish would be for Lachlan to live a healthy, happy life and to live his life to the fullest."

Cuddles, laughter, the aroma of toast and a simple wish will greet Claire Ivey when she wakes on Sunday.

Crumpled wrapping paper and discarded ribbons will tangle with sheets while she unwraps presents carefully chosen by her son Lachlan and daughter Isabella at a school Mother's Day stall earlier in the week.

Husband Kristen will serve breakfast in bed as the hard-working mum laps up her well-deserved spoiling session.

Across the nation, there will be similar scenes as hundreds of thousands of Aussie families celebrate the special women in their lives.

And for a few thousand of these mums, there will be bitter-sweet moments.

Pure joy as their kids wrap their arms around them and absolute heart-ache that the little body they hold close conceals a ticking time-bomb.

Lachlan Ivey is one of more than 400 children treated by Lady Cilento Children’s Hospital in Brisbane for the devastating impacts of cystic fibrosis.
Lachlan Ivey is one of more than 400 children treated by Lady Cilento Children’s Hospital in Brisbane for the devastating impacts of cystic fibrosis. Sherele Moody

LIKE many kids his age, Lachlan Ivey's pre-adolescent chatter suddenly stalls as a stranger walks into the room.

Sitting a few feet from his mother in a well-lit ward on level five at Lady Cilento Children's Hospital in Brisbane, the 12-year-old fiddles distractedly with the bum bag strapped around his waist.

The bag hides an intravenous pack laden with antibiotics, which are slowly drip-fed into his long gangly body.

The drugs are on an important mission - to wipe out the pseudomonas aeruginosa bug attacking his growing lungs.

Stretching his long legs out, Lachlan finds his voice as the conversation turns to his favourite topic - kung fu.

"It's like gymnastics and karate mixed together," he says.

"It's fighting and doing back flips and all that.

"I love doing back-flips and doing other crazy stuff basically - like front flips and cartwheels."

He re-lives his greatest kung-fu triumph - scoring a world title in America in 2013.

"I don't know how many I've won," he says of his successes.

Lachlan Ivey
Lachlan Ivey Sherele Moody

CLAIRE and Kris Ivey were over the moon when they found out they were expecting their first child.

Mrs Ivey, a primary school teacher, and her aged care specialist husband yearned for the pitter patter of tiny feet.

But the joy of welcoming Lachlan into the world soon turned to anger, sadness and worry as they found out an insidious seed was sprouting inside in their precious baby.

Lachlan was born with cystic fibrosis.

Both Mr and Mrs Ivey - who come from Warwick and now live in Brisbane - were unaware they both carried the CF gene when they embarked on the path to parenthood.

"We had no idea," she says.

"We knew he wasn't thriving, we knew there was something going on because he wasn't putting on weight.

"He wasn't sleeping.

"It was terrible when we found out.

"We went through the grieving process - it was really upsetting."

Lachlan is one of 420 Queensland and Northern Rivers, NSW, children treated by Lady Cilento's specialist cystic fibrosis team.

On the outside, people with the disease look healthy and appear to thrive, but on the inside CF plays havoc with their bodies.

It hinders the protein that controls the flow of salt in and out of the body's cells, causing thick sticky mucus to clog tiny air passages in the lungs and trap bacteria.

The bacteria leads to infections - sometimes four or five at a time.

And there is no healing the wounds as the infections scar the delicate tissue.

Eventually the lungs can no longer do their job and, without a transplant, most sufferers will die before they turn 40.

People with CF also face a high risk of diabetes and problems with the pancreas and digesting food.

Many CF kids spend at least two weeks a year in the South Brisbane hospital under-going tune-ups - antibiotics for infections, loads of fat and salt laden to food to help them grow and put on weight and intensive physio sessions designed to improve the capacity of their lungs.

Lachlan Ivey
Lachlan Ivey Sherele Moody

IT takes a huge team of medical professionals to keep youngsters like Lachlan healthy.

Lady Cilento's dedicated crew of doctors, physiotherapists, dietitians, social workers, occupational therapists, mental health workers, clinical and general nurses and a teacher have one focus - turning the tide on a disease that can turn the life of a happy child upside down.

The CF clinic also provides outreach services to Mackay, Rockhampton, Toowoomba, the Fraser Coast, the Gold Coast, Cairns and Townsville

Leading the charge is Dr Claire Wainwright who moved to Australia from the UK in 1990.

The paediatric respiratory infection specialist has made cystic fibrosis her life's work.

Speaking with a soft English lilt, the University of Queensland associate professor says lung disease piqued her interest as a junior doctor in London.

"When I was newly qualified ... a mother walked in and she had a 13-month-old baby," she says.

"She put the baby on the desk in front of me.

"And she said 'I'm not walking out of here until you tell what's wrong with my baby'.

"I looked at the baby who was very thin and was coughing.

"I had this very nasty suspicion this baby might have cystic fibrosis.

"I did the testing and the baby came back positive.

"I then had an argument with my seniors who wanted us to keep looking after this baby and I said 'no, we need to send this baby to a specialist centre'.

"I sent the baby there and I got in terrible trouble.

"Subsequently it's become quite clear that it's important for children with CF to be managed in specialist centres.

"Without specialist care, children will not do well - it's unfortunate but it's true."

Dr Wainwright has about 80 young CF patients and many of those she has known since they were born.

"Many of the patients I've looked after are now adults," she says.

"When I started, sadly I was looking after children who faced early death in childhood.

"Now death in childhood is rare."

Lachlan is one of Dr Wainwright's 80-odd CF patients.

As he enters his teenage years, the risk of infections attacking his lungs will increase dramatically.

"The biggest risk for CF patients is during the adolescent years - that's when you lose the most lung function," Dr Wainwright says.

"We have to work very hard with our families and patients so they don't lose lung function."

Physiotherapist Rachel Thomas, nurse Liz Shevill and dietitian Annabel Biven have spent thier working lives improving the health of children with CF.

The ward has beds for 15 patients and often the youngsters can be in hospital for weeks if not months.

Ms Thomas, a physio for eight years, helps put the bounce back into their steps.

"We have a lot of contact with them - we get to know them quite well," she says of her patients.

"We focus on airway clearance and exercise - breathing exercises and working out in the gym or jumping on the trampoline.

"Trampolines are great for little kids, they get the benefit of huffing and puffing but also the jumping helps loosen the secretions."

Food is a major problem for most CF patients but dietitian Annabel Biven knows what it takes to keep the kids fuelled.

"Attitudes and behaviours across the broad age groups of the children can be a huge challenge," Ms Biven, who started with the CF team about five years ago, says.

"There are behavioural barriers in each age group - from toddlers to adolescents.

"But for children of Lachlan's age, the huge challenge is the big calorie needs.

"His calorie requirements can be double the intake of a child without CF.

"And he needs to take tablets every time he eats to make sure he can absorb his nutrition.

"And that's on top of vitamin supplements."

Lady Cilento's nurses are the unsung heroes of the cystic fibrosis team.

There were some sad moments for Liz Shevill when she started working as a nurse in the 1980s.

"I just enjoy the families, I enjoy the children and we have such a nice clinic and nice outcomes in this day and age," the 56-year-old says.

"When I worked in Canberra in the 1980s, the kids weren't doing so well.

"Right now we're seeing some really good outcomes in paediatrics."

Lachlan Ivey
Lachlan Ivey

LADY Cilento's cystic fibrosis medical team is giving children like Lachlan a stronger hold on life and a precious gift for mums- the ability to hug their sons and daughters for many Mother's Days to come.

"CF hasn't stopped him from reaching his goals so far and I know he will keep striving for his dreams despite having cystic fibrosis," Mrs Ivey says.

- APN NEWSDESK

Topics:  cystic fibrosis editors picks mother's day



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