Living with the 'invisible' illness of cystic fibrosis

INVISIBLE: Kristy Hunt with her kids Skyrah and Lincoln Cain, who both have cystic fibrosis, a genetic disorder.
INVISIBLE: Kristy Hunt with her kids Skyrah and Lincoln Cain, who both have cystic fibrosis, a genetic disorder.

Kristy Hunt’s kids are the picture of health, but behind their big smiles and boundless energy lies a life-threatening illness.

Lincoln Cain, 7, was diagnosed with the genetic disorder cystic fibrosis at six-weeks-old, while his sister Skyrah, nearly 3, was diagnosed before birth.

Ms Hunt describes cystic fibrosis as an “invisible illness”, because to many, the impacts on her kids and her family are not immediately obvious.

But Lincoln and Skyrah’s treatment is relentless – they have to undergo daily physiotherapy to clear their airways of mucus and must take medication before eating to ensure their bodies can properly digest food.

There are also several trips a year to the Royal Children’s Hospital in Melbourne for tests to monitor their health.

Cystic fibrosis mostly affects the lungs and digestive system, and one in every 2500 babies will be born with the condition.

The month of May is earmarked as 65 Roses Month, a time to boost awareness of the condition.

Ms Hunt said she and the kids’ father Tim Cain knew very little about cystic fibrosis before Lincoln’s diagnosis.

As it turned out, Ms Hunt and Mr Cain were genetic carriers, which meant their children had a one in four chance of having cystic fibrosis.

One in 25 Australians of Caucasian heritage are genetic carriers of the illness.

Ms Hunt said Lincoln’s diagnosis came as a massive shock to the family, taking away their happiness at becoming parents for the first time.

She said she even struggled to remember Lincoln’s early days of life, so great was her grief over his diagnosis.

But by the time Skyrah came along, they were much better prepared for the challenges the condition posed.

“We try not to let it impact us, we try to get the kids to do what all kids do,” Ms Hunt said.

But their health must be monitored and they are more susceptible to lung infections - Lincoln knows he has to be careful around sick kids at school.

When he was younger he had to be hospitalised twice for lengthy stays.

For Lincoln, the worst aspects of living with the condition are the needles and “not being able to eat what I want, when I want”.

PLAYFUL: Skyrah and Lincoln Cain.

PLAYFUL: Skyrah and Lincoln Cain.

Ms Hunt said she believed many people did not understand how dangerous the illness could be, nor how it affected people’s lives.

Cystic fibrosis is a life-limiting condition and while improvements in treatment have extended life expectancy, the average person with cystic fibrosis is still expected to live to just 38 years old.

“People die every day from it,” Ms Hunt said.

But she said she had been helped by a strong local support network, which she now led as president.

Ms Hunt said she also had gained a different, more positive outlook on life.

“I think once you have kids things change, but once you have sick kids, you appreciate everything more,” she said.

While she has handed over the reins this year, Ms Hunt has organised the local Great Strides fun run for several years.

The event raises funds for Cystic Fibrosis Victoria and will be held in October.